ADAPTED DANCE – CONNECTING MIND, BODY AND SOUL

Rachel R. Swinford

Submitted to the faculty of the University Graduate School in partial fulfillment of the requirements

for the degree Doctor of Philosophy

in the School of Health and Rehabilitation Sciences, Indiana University

October 2012

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Accepted by the Faculty of Indiana University, in partial fulfillment of the requirements for the degree of Doctor of Philosophy.

_______________________________

Marsha L. Ellett, PhD, RN, CNE, Chair

_______________________________

Jeffrey L. Crabtree, OTD

Doctoral Committee

_______________________________

Sara L. Horton-Deutsch, PhD, RN

_______________________________

Rebecca S. Sloan, PhD, RN

September 7, 2012

_______________________________ Kathleen A. Stanton-Nichols, PhD

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© (2012)

Rachel R. Swinford

ALL RIGHTS RESERVED

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ACKNOWLEDGEMENTS

It has been a long journey and there have been so many people along the

way who played an integral role in my success. First and foremost I have to

thank God for providing the opportunities and avenues for me to get to this point

in my life. Without God in my life I am 100% confident that I would not be where I

am today. As I continue to grow in my faith I realize the importance of following

the paths that are set forth.

Second, I have to thank my husband, Jeremy, for all of his support over

the past few years. I know it was not always easy and I was not always pleasant

to be around, but you stuck by my side and encouraged me when I was

struggling and pushed me when I needed to be pushed. Thank you for being you!

I’m so excited to start this new chapter of our lives.

Next, I thank Dr. Sloan for inspiring me to learn about phenomenology and

for all of her guidance in this project. Similarly, huge thanks to Dr. Ellett for

coming on board late in my project, but helping as if you had been a part of it the

whole time. I have learned so much from these two mentors and am so lucky to

have had their help along the way. I would also like to thank Drs. Crabtree,

Horton-Deutsch, and Stanton for serving on my committee. I would also like to

thank my fellow classmates and instructors from the Hermeneutic Circle for

giving me valuable feedback on my study.

The next person I would like to thank is Kyra. Without her leadership of the

Live Laugh Dance Camp I would not have been able to complete the dance

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program or my dissertation. Kyra’s role in the dance program far exceeded my

expectations and I could not have been happier with the program’s success.

Likewise, huge thanks to Allison, Jessica, Marcy, and Alyssa for your assistance

and support throughout the Live Laugh Dance Camp. The four of you played an

important role each week and were a big help. Lastly, thank you to all of the

volunteers – Erin, Larken, Kaci, Jenna, Brittni, Amanda, Tabitha, Kylie, Nicole,

Brenden, Linda, and Katherine. I was completely overjoyed by the number of

people who wanted to volunteer. The volunteers helped provide an almost one-

on-one ratio of instruction for the dancers and were a large part of the program’s

success.

In addition to the instructors for the dance program I must also thank the

dancers and their families. Without their participation there would not have been

a Live Laugh Dance Camp. I had a blast working with everyone and I am thrilled

that we have continued the program for a second year.

In addition to instructors, dancers, and families, I must thank Shannon for

all of her help with the transcriptions. This was such an enormous help and a

wonderful service that you provided. Thank you so much!

There are three people in particular that I need to thank for encouraging

me to continue my education and pursue a PhD – Drs. Bahamonde, Mikesky,

and Stanton. Thank you for believing in me! All three of you have had a large

influence on me in both my studies and as a professional. Dr. Stanton, I would

like to thank you specifically for encouraging me to follow my passion – probably

the most valuable advice that I received along the way.

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I would also like to thank Theresa and Stephen Cone for all of their advice

when planning the adapted dance program. I met Theresa and Steve at a

national AAHPERD convention where they presented a session on dance for

individuals with disabilities. Both their presentation and their book helped

tremendously and had a huge influence on the design of program.

Lastly, thank you to everyone who supported me throughout the writing

process. This was not an easy task, but with help from all of you I finally made it!

Thank you to Mom, Dad, Jodi, Steve, Jen, Kim, Kathryn, Kyra, Allison, Marcy,

Katy, Marissa, Rebecca, Kristen, Hilary, Lisa, Liz, Sandy, Steve, and Brian. You

have no idea how all of the prayers, texts, emails, and phone calls helped keep

me on track!

Live * Laugh * Dance

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PREFACE

Why adapted dance? My true passion in life has always been dance! In

addition to loving dance, I also have always enjoyed working with individuals with

disabilities – in particular individuals with intellectual disabilities. Growing up I had

an aunt who was mildly cognitively impaired. Although she was 20 years older

than me she was still one of my best childhood friends. We had so much fun

together and I loved making her smile and laugh. This is what initially sparked my

interest in working with individuals with disabilities.

During my undergraduate career I had the privilege of taken Dr. Stanton’s

course titled Physical Activity Programming for Individuals with Disabilities. As

part of this course I was required to participate in a service learning experience

where I was paired one-on-one with a client who had a disability. The young lady

I was paired with had Down syndrome. I worked with my client once per week as

a personal trainer at a local gym. In the beginning I had a very hard time getting

her to perform any type of cardiovascular exercise. However, during the 3rd or 4th

week I decided to try aerobic dance in the group fitness studio at the gym. She

loved it! From that point on I focused my lesson plans around dance. This

experience is what sparked my interest in dance for individuals with Down

syndrome.

After searching the literature I realized that not a lot of data exists on

dance for individuals with Down syndrome. This is why I chose to create an

adapted dance program specifically for adolescents and young adults who have

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Down syndrome. The adapted dance program is currently in its second year and

is titled the Live Laugh Dance Camp.

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ABSTRACT

Rachel R. Swinford

ADAPTED DANCE – CONNECTING MIND, BODY AND SOUL

Using Heideggerian interpretive phenomenology, this study illuminates the

lived experience of an adapted dance program for individuals with Down

syndrome and their family members. The overall pattern from both dancers and

family members was adapted dance: connecting mind, body and soul. The

primary theme from dancer interpretations was expressing a mosaic of positive

experiences, and the primary theme from family member interpretations was

experiencing pride in their loved ones. The dance program provided dancers an

opportunity to express their authentic self while experiencing moments of full

embodiment in the connection of their mind, body and soul. While dancers

experienced the connection of mind-body-soul, family members recognized the

importance of this connection in their loved one. This research is instrumental in

advocating for opportunities for individuals with Down syndrome to experience

dance as a social, physical and intellectual activity that results in learning and

increasing social interactions. The research findings from this study can support

future initiatives for dance programs that may influence a population that has

limited access to physical activity and dance. The study’s teaching strategies,

dance activities, class procedures and sequences, and feedback techniques can

be used by other professionals who teach individuals with intellectual disabilities.

Marsha L. Ellett, PhD, RN, CNE, Chair

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TABLE OF CONTENTS

Chapter I: The Problem ...................................................................................... 1 Introduction ....................................................................................................... 1 Statement of the Problem .................................................................................. 4 Purpose and Significance of Study .................................................................... 4 Scope of the Study/Limitations of the Study ...................................................... 6 Methodology ...................................................................................................... 6

Heidegger’s Interpretive Phenomenology ...................................................... 6 Heidegger’s Concept of Personhood ............................................................. 7 Quality Criteria for Interpretive Phenomenology Research .......................... 10

Summary ......................................................................................................... 12 Chapter II: Review of Literature ....................................................................... 13

Overview ......................................................................................................... 13 Theoretical Framework .................................................................................... 15 Historical Background ..................................................................................... 16 Review of Literature ........................................................................................ 18

Adapted Physical Activity ............................................................................. 18 Dance .......................................................................................................... 21

Summary ......................................................................................................... 24 Chapter III: Methodology.................................................................................. 26

Introduction ..................................................................................................... 26 Research Design ............................................................................................. 26 Sample/Population of Interest ......................................................................... 26 Selection of Subjects ....................................................................................... 27 Procedures ...................................................................................................... 28

Study Approval and Informed Consent ........................................................ 28 Dance Program ............................................................................................ 29 Interviews ..................................................................................................... 36 Dancer Interviews ........................................................................................ 37 Family Member Focus Groups and Interviews ............................................. 38

Methodology/Data Analysis ............................................................................. 38 Chapter IV: Results .......................................................................................... 41

Participants ..................................................................................................... 42 Adapted Dance: Connecting Mind, Body and Soul .......................................... 43

The Metaphor .............................................................................................. 44 Dancers Experiencing a Mosaic of Positive Experiences ............................... 45

An Overall Enjoyable Experience for Dancers ............................................. 46 Family Members Experiencing Pride in Loved Ones ...................................... 52

Enjoying Seeing Loved Ones Develop New Relationships ......................... 53 Observing Increases in Confidence and Independence .............................. 56

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Recognizing an Emerging Ownership of Skills ........................................... 61 Identifying an Increase in Rhythm ............................................................... 63 Underestimating Potential in Loved Ones ................................................... 65

Summary ......................................................................................................... 68 Chapter V: Discussion and Conclusions ....................................................... 70

Discussion ....................................................................................................... 71 Significance of Findings .................................................................................. 77 Evaluation of Quality Criteria ........................................................................... 78 Limitations of the Study ................................................................................... 78 Suggestions for Further Research ................................................................... 81 Summary and Conclusions ............................................................................. 83

Appendices ....................................................................................................... 85 References ...................................................................................................... 106 Curriculum Vitae

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Chapter I: The Problem

Introduction

Down syndrome, medically referred to as Trisomy 21, is a genetic

condition that occurs when a baby is born with an extra copy of the 21st

chromosome. It has been estimated that approximately 1 in every 800

babies are born with Down syndrome each year in the United States, and

1 in 1,000 children and adolescents aged 0-19 years of age have Down

syndrome (Sherman, Allen, Bean, & Freeman, 2007; Shin et al., 2009).

Individuals with Down syndrome often exhibit commonalities in physical

appearance including short stature, small hands and feet, flat feet, and

slanted eyes. Additionally it is common for individuals with Down

syndrome to experience physiological issues such as atlantoaxial

instability (or instability between C1 and C2 vertebraes), hypotonia, and

heart and lung problems (Angelopoulou, Tsimaras, Christoulas, &

Mandroukas, 1999; Maatta et al., 2011; Pueschel & Scola, 1987). All

individuals who have Down syndrome also have some degree of cognitive

impairment. However, the level of impairment is very individual and can

range from mild to severe as measured by intelligence tests (Fraser &

Sadovnick, 1976; Hurley & Sovner, 1982). Therefore, the range of

intellectual ability varies on an individual basis.

Individuals with Down syndrome often experience low levels of

physical activity that can contribute to both cardiovascular disease (Pitetti,

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Rimmer, & Fernhall, 1993) and obesity (Rubin, Rimmer, Chicoine, Braddock, &

McGuire, 1998). It is also common for individuals with Down syndrome to

experience decreased levels of social participation that can lead to a lower

quality of life (Heah, Case, McGuire, & Law, 2007). Therefore, physical activity

for individuals with Down syndrome is very important, however, it is sometimes a

challenge due to potential limitations such as low fitness capacity; balance and

coordination issues; extreme range of motion limitations; and trouble reaching

their age-predicated maximal heart rate (Balic, Mateos, Blasco, & Fernhall, 2000;

Fernhall et al., 1996).

Regardless of limitations, physical activity is still important for individuals

with Down syndrome, and a set of guidelines should be followed when

programming physical activity or exercise. Adapted physical activity is a term that

is often used to describe physical activity that is performed by individuals with

disabilities. In simple terms, the addition of the word adapted to physical activity

implies that adaptions are being made based on an individual’s skills and abilities

that focus highly on what an individual can do. In general, adapted physical

activity should be structured and made as fun as possible (Mahy, Shields, Taylor,

& Dodd, 2010). Many individuals with Down syndrome experience both cognitive

and social difficulties; thus, a system of rewards should be set in place for

behavior modification when working with individuals who have Down syndrome

(Bennett, Eisenman, French, Henderson, & Shultz, 1989). When compared to

children without Down syndrome, children with Down syndrome have been found

to have more behavioral issues such as attention-deficit, non-compliance, and

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social withdrawal (Coe et al., 1999). Despite these problems, social

interaction is extremely important for individuals with Down syndrome, and

having a behavior modification system in place will help increase

adherence to the activity.

Parents of children with Down syndrome also identify the need for

physical activity for their children. A recent qualitative study found that

parents enjoy seeing their child with Down syndrome participate in

physical activity for the following reasons: (a) was a positive influence on

health, (b) provided social interaction with individuals with and without

Down syndrome, (c) encouraged independence for teenagers and adults

when involved in an individual sport, (d) offered community programming

for individuals with Down syndrome, and (e) included support for parents

from adapted specialists to help increase at-home physical activity

(Menear, 2007).

Individuals with Down syndrome benefit from opportunities to increase

physical activity as well as social participation. Dance is an activity that can

achieve both of these goals. Dance has been explained as a fun and enjoyable

physical activity that promotes social interaction and a sense of community

(Connor, 2000). Additionally, dance has been shown to increase a variety of

physical functions such as balance, strength, and flexibility; it increases overall

health; and also has an influence on one’s general well-being (Keogh, Kilding,

Pidgeon, Ashley, & Gillis, 2009). Therefore, an adapted dance program

specifically designed for adolescents and young adults with Down syndrome is

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an appropriate activity with the potential for having a variety of positive effects for

dancers and for their family members as well.

Statement of the Problem

It is known that adapted physical activity can be useful in increasing

activity levels, and social participation for individuals with Down syndrome (King

et al., 2003; Murphy & Carbone, 2008; P. E. Wilson, 2002). However, it is not

known how participation in an adapted physical activity, specifically an adapted

dance program, is experienced by individuals with Down syndrome and their

family members. While professionals view increased physical activity and social

interaction as potential positive outcomes for individuals with Down syndrome, no

literature exists on what the proposed dancers and their family members actually

experience as a result of participation in this type of activity. This qualitative study

was developed to understand the potential outcomes that can only be

experienced by those who are affected by Down syndrome and their family

members. This study provides an insider-out view by seeking the perspectives of

individuals who are affected by the condition, rather than using an outsider-in

view of seeking the perspectives of professionals in the area.

Purpose and Significance of the Study

The purpose of this study was to explore the lived experience of

participation in an adapted dance program for individuals with Down syndrome

and their family members. For this study, there were two specific aims:

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1. To illuminate the experience of an adapted dance program as

perceived by the dance participants.

2. To illuminate the experience of an adapted dance program as

perceived by family members of the dance participants.

These two aims were achieved by conducting one-on-one unstructured

interviews with dance participants who have Down syndrome followed by one-on-

one telephone or small focus group interviews with their family members.

Interpretive phenomenology was the inquiry and analysis method guiding this

study.

Understanding the lived experience of an adapted dance program,

as perceived by dance participants and their family members, can

enhance future physical and social activity opportunities for individuals

with Down syndrome. When the dancers and family members were asked

for their inside-out view of this activity, light was shed on how adapted

dance programs connect mind, body and soul. This in turn can provide

previously unrecognized physical, social, and psychological benefits for

individuals with Down syndrome. Using a qualitative approach to explore

the lived experience of an adapted dance program for individuals with

Down syndrome and their family members provides dance instructors,

physical educators, and rehabilitation specialists with a deeper

understanding of how the dancers and family members view dance

experiences, beyond what is objectively measurable. Findings from this

study have noteworthy implications for adapted physical activity

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specialists. This information is beneficial because physical activity programming

for individuals with Down syndrome can sometimes be a problematic (Drum et

al., 2009; J. H. Rimmer, Chen, McCubbin, Drum, & Peterson, 2010).

Scope of the Study/Limitations of the Study

This is an initial study into the previously unrecognized outcomes of

adapted dance programs developed specifically for individuals with Down

syndrome and their family members. It is limited in the small number of

participants and will need replication to strengthen the findings. It is also limited

in the age of dance participants and further studies should examine a larger age

range.

Methodology

Heidegger’s Interpretative Phenomenology:

A Philosophical and Methodological Framework

Interpretive phenomenology was the inquiry and analysis method guiding

this study. The goal of interpretive phenomenology is to identify meaning and

gain understanding of personal experiences (Lopez & Willis, 2004). Specifically

for this study, a Heideggerian view of personhood was the philosophical

framework. Martin Heidegger was a 20th century German philosopher who

viewed phenomenology based on ontology, or the nature of being. He used the

term, Dasein, or being-in-the-world, to describe personal meanings of events or

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situations for individuals as they inhabit their own unique everyday worlds

(Leonard, 1989). Essentially the word Dasein describes a snapshot in time

as interpreted by the person having the experience. Heideggerian

phenomenology is context specific and highly individual in that each

person perceives experiences differently based on their own life’s

understandings. He believed that individuals are thrown into a world not of

their choosing that influences who they are, what they believe, and how

they think from the day they are born (Leonard). This has important

implications in this study because individuals with Down syndrome are

born into a world not of their choosing. From a very young age their

disability has some influence on how their world is being formed. Similarly,

parents of children with Down syndrome may also experience a change in

their world the moment their child with Down syndrome is born.

Heidegger’s Concept of Personhood

Heidegger described five characteristics that should be considered

when studying human beings (Leonard, 1989). These five characteristics

can be classified as what he termed personhood. The first characteristic

describes the person as having a world, which implies the world is a

meaningful place that we are born into. At birth we are thrown into a world

not of our choosing that begins affecting who we are. We are thrown into a

specific language and culture, which begins molding us as humans at a

very young age. He believed that the world is often overlooked as a taken-

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for-granted lived experience of everydayness. In interpretive phenomenology it is

essential that the individual’s unique world be taken into account, such as being

born with Down syndrome or being the parent of a child with Down syndrome, as

it is the world that shapes and influences our interpretation of experiences.

Leonard (1989) states “phenomenologically, world is the meaningful set of

relationships, practices, and language that we have by virtue of being born into a

culture” (pg. 43). Individuals with Down syndrome are not only born into a

specific culture, they are also born into a culture of having Down syndrome.

Leonard (1989) describes the second characteristic as “the person as a

being for whom things have significance and value” (pg. 45). This statement

explains that to understand a person’s behaviors or expressions, we must study

the person in his/her particular context, as it is only there that the person with

Down syndrome or his/her families will find meaning and importance in their

experience. The context of interest in this study was an adapted dance program.

The third characteristic describes that a person is self-interpreting

(Leonard, 1989). This is important in that it describes how human beings engage

in experiences based on their interpretive understanding of things. Therefore, it is

important to realize the importance of past experiences such as living with Down

syndrome, which influences the future. An example for parents of individuals with

Down syndrome would be their child’s participation in their first sport. It might be

assumed that there is something universal about your child playing a sport for the

first time. However, this is most likely not the same experience for parents of

children with Down syndrome.

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The fourth characteristic describes how the person is embodied,

which can be described as bodily intelligence whereas our bodies move in

and interpret the world we live in (Leonard, 1989). Further, it is about how

the body is part of the experience and/or how a “thing” may be embodied.

In the present study, the embodiment of dance and Down syndrome was

explored. This is a unique observation because dance itself has been

described as an embodying experience (Block & Kissell, 2001). For family

members, the embodiment of having a loved one who has Down

syndrome can be explained as a rollercoaster of emotions. Some

experiences create emotions such as sadness and anger, whereas other

experiences create emotions of joy and pride. One mother explains her

journey of raising a son [Peter] who has Down syndrome (Maxwell & Barr,

2003).

“…with hindsight the journey has been made easier for us by friends and professionals who took time to listen to what I was saying, knowing I only wanted the best for Peter and attempting to find it for me. By friends who allowed me to cry when I needed, and to rejoice when he achieved some particular goal no matter how small. By the school and its teachers who have kept on working with Peter over the years and watch with satisfaction his achievements. By David [father] and Aymie [sister] who just love Peter for himself, and probably by myself for never giving up and always knowing he would do things eventually” (Maxwell & Barr, 2003).

The fifth characteristic is described as the person in time, which

implies the past, present, and future are all intertwined and influence one’s

meaning and interpretation of experiences (Leonard, 1989). Therefore, the

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dance participants’ and their family members’ past involvements influenced how

they interpreted the adapted dance program.

These five characteristics of personhood are important in understanding

the world of adapted dance as experienced by individuals with Down syndrome

and their family members. All five of these characteristics were taken into

account in the present study, and are further explained in chapter four.

Quality Criteria for Interpretive Phenomenology Research

Within any methodology there will always be validity issues. For

interpretive phenomenology there are four criteria that can be used to evaluate a

study – (a) trustworthiness, (b) consistency, (c) neutrality, and (d) applicability.

Trustworthiness, similar to the quantitative term validity, indicates whether a

study provides an accurate description of participants’ lived experiences

(Leonard, 1989). The first way trustworthiness was accomplished in this study

was that the individuals with Down syndrome and their family members were the

only people interviewed. Experts were not used to explain this experience; only

the individuals who own the experience were interviewed. Trustworthiness was

also accomplished in the present study by the researcher acknowledging any

preconceived notions and attempting to interview with limited presumptions and

an open mind. Furthermore, the researcher did not ask any leading or guided

questions during the interviews.

Consistency can be thought of in the same way reliability is used in

quantitative research. Consistency is found when the individual narratives

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describe similar (though not necessarily identical) perceptions of events or

conditions and the meanings of those events or conditions for the

individual. This was done in the present study by allowing both dancers

and family members to share their own individual stories of participation in

the dance program. After all interviews were completed the transcripts

were evaluated to find any shared meaning across both dancers and

family members. Further, consistency was found in the interpretation of

narratives by the researcher, as well as by consensus with the members

of the Hermeneutic Circle (i.e. the team of researchers for this study) who

found similar understandings in the texts of dancers and family members.

Neutrality is a term used in quantitative work to describe the

techniques in methods and analysis that the investigator used to limit

biased results, such as control groups, blinded interventions and others.

In qualitative work we make no presumption that we can be completely

neutral; however, we do claim that we can set our biases aside to allow a

new understanding to emerge (Leonard, 1989). For the present study it

was imperative that the researcher maintained integrity of the data and

avoided imposing her perceptions and understandings. It is important for

investigators to examine their own perceptions about an event or situation

prior to and throughout the study’s progress. Using a team of researchers

helps each investigator to identify personal biases and set them aside so

that the participants’ stories can be heard (Leonard, 1989). For the current

study, neutrality was supported with the use of a team of researchers

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during data analysis. Furthermore, the researcher sought to set aside all biases

and preconceived notions prior to conducting interviews.

Applicability can be thought of the same way generalizability is used in

quantitative research. Applicability is used to assess whether the results of the

study can illuminate contexts outside of the current study (Leonard, 1989).

Another term for applicability is usefulness. This explains whether both the

researcher and readers can use the information in their own individual settings.

In other words, the results of this study are useful for not only the researcher, but

also for the readers who may be able to implement the findings in their own work.

Summary

Although physical activity is important for individuals with Down syndrome,

it can sometime be challenging to create an effective program (Drum, et al.,

2009; J. H. Rimmer, et al., 2010). Using Heideggerian interpretive

phenomenology, this study illuminates the dance participants’ and their family

members’ lived experience of an adapted dance program. The information was

gathered by conducting one-on-one unstructured interviews with dance

participants who have Down syndrome followed by one-on-one telephone or

small focus group interviews with their family members. Results of this study

provide individuals with Down syndrome and their family members, dance

instructors, physical educators, and rehabilitation specialists with a deeper

understanding of how the dancers and family members view dance experiences,

beyond what is objectively measurable.

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Chapter II: Review of Literature

Overview

It has been shown that both physical and social activities influence

quality of life for people with Down syndrome (Eria Ping-ying, 2006; Heah,

et al., 2007). Although physical activity is important for individuals with

Down syndrome, they often participate at lower levels when compared to

individuals without Down syndrome (Shields, Dodd, & Abblitt, 2009; Whitt-

Glover, O'Neill, & Stettler, 2006). A recent qualitative study identified three

barriers and three facilitators to physical activity for individuals with Down

syndrome. Participants took part in physical activity when they had

support from others, when the physical activity was fun or had an

interesting purpose, and when the physical activity was routine and

familiar. The reasons for not participating included lack of support, simply

not wanting to do physical activity, and/or medical/physiological factors

(Mahy, et al., 2010). These findings had an influence on the design of the

adapted dance program for the current study. For example, the dance

program was designed to be a fun experience, the dancers had support

from several volunteers, and every dance class followed the same

format/structure.

Dance is an activity that can offer many physical benefits as well as

emotional and social benefits (Keogh, et al., 2009). Dance is often used as

a physical and psychological therapeutic intervention for people with

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disabilities as well as some illnesses such as cancer (Cohen & Walco, 1999).

Dance or movement therapy is based on the belief that the emotional, physical,

and intellectual health of an individual can be manipulated through changes in

movement because personality is directly connected to the way we move (Alpert,

2011). For example, Dupont & Schulmann (1987) investigated the physical

effects of a 6-month dance therapy intervention for children with Down syndrome.

They found balance significantly improved in the treatment group compared to a

control group.

Adapted dance differs from traditional dance in that it can focus on

individual skills for a range of varying capabilities. Individuals with Down

syndrome often have limited physical and cognitive abilities requiring alterations

from standard dance techniques. Adapted dance is common among individuals

with a variety of disabilities, including both cognitive and physical impairments

(Goodwin, Krohn, & Kuhnle, 2004; Wilson, 2010). A recent qualitative study

found that dance and music can be used as avenues to increase social

participation for children with intellectual disabilities (Sooful, Surujlal, & Dhurup,

2010). Results of the study showed that music and dance are positive mediums

for incorporating individuals with intellectual disabilities into the community.

Although dance is often used as a form of physical activity for individuals

with disabilities, adapted dance for individuals with Down syndrome has received

minimal attention both quantitatively and qualitatively. This study aims to explore

the lived-experience of an adapted dance program, as perceived by dance

15

participants and their family members using Heideggerian interpretive

phenomenology.

Theoretical Framework

Heideggerian interpretive phenomenology was used as the

methodology for this study. Specifically, hermeneutic interpretive

phenomenology was the guiding principle for data collection and analysis

in this study. Leonard (1989) described “a hermeneutic of Dasein as an

interpretive effort through which light is shed on the meaning of being” (pg.

51). The goal of hermeneutics is to understand everyday experiences and

to find commonalities in meanings of such experiences. A common term

associated with hermeneutics is the hermeneutic circle, which refers to the

cyclic interpretation of experiences. It describes how a text cannot be

interpreted without understanding all parts such as the background and

the specific context of an experience (Leonard).

Using the concept of personhood, this study explored the dance

participant’s world as an individual with Down syndrome through his/her

experience participating in an adapted dance program. Because dance

involves using the body and its movements as the means of experiencing

and expressing ideas, concepts, and feelings, it aligns with Heidegger’s

embodying characteristic of personhood (Leonard, 1989). The dancers’

lived experience was evidenced through their active participation

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throughout the dance program. The family members’ lived experience was

shown through observation of a loved one in the dance program.

Results of this study reveal future possibilities to improve teaching

strategies that accommodate individuals with Down syndrome in dance

programs. Gardner, Komesaroff, and Fensham (2008) explored young people’s

experiences in dance classes and found that the dance classes increased self-

confidence, enhanced respect for physical activity, and influenced social

relationships. The results of this study reveal similar benefits and experiences for

young people with Down syndrome, and benefits were also recognized by their

family members.

Historical Background

Phenomenology can be traced back to the first decade of the 20th century

(Speziale & Carpenter, 2007). Its emergence can be divided into three distinct

phases (a) preparatory, (b) German, and (c) French. The preparatory phase

primarily involved the works of two philosophers – Franz Brentano and his

student Carl Stumpf. The prominent concept that emerged from this phase was

intentionality or the belief that the consciousness is always conscious of

something (Speziale & Carpenter).

The German phase consisted of two more philosophers – Edmund

Husserl and Martin Heidegger (Speziale & Carpenter, 2007). These philosophers

developed the concepts of essences, intuiting, and phenomenological reduction.

Essences refer to elements that are related to the true meaning of a

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phenomenon and provide a common understanding. Intuiting describes

how one should accurately interpret what is meant in the descriptions of

phenomena. This is done through what is called imaginative variation, in

which a researcher varies the data in as many ways as possible in relation

to the description/s of the experience. Phenomenological reduction is a

technique that researchers follow when analyzing descriptions about

phenomena. Essentially it is a process that attempts to avoid a

researcher’s biases and preconceived notions (Speziale & Carpenter).

The French phase consisted of three philosophers – Gabriel

Marcel, Jean-Paul Sartre, and Maurice Merleau-Ponty--who further

developed what is known as embodiment and being-in-the-world (Speziale

& Carpenter, 2007). Embodiment describes how one gains access to the

world by being consciously aware of being-in-the-world (Speziale &

Carpenter). This study explores what it means to be embodied through the

experiences of dance for adolescents and young adults with Down

syndrome. Although family members do not share the physical activity of

embodiment in the adapted dance program, they did have the embodied

experiences of pain or joy, for example, as their loved one experienced

the adapted dance program.

18

Review of Literature

Adapted Physical Activity

Adapted physical activity for individuals with Down syndrome is extremely

important for both health reasons and social interaction. Despite this fact,

physical activity participation among individuals with Down syndrome is lower

when compared to peers without Down syndrome (Carmeli, Ariav, Bar-Yossef,

Levy, & Imam, 2012; Whitt-Glover, et al., 2006). This low participation in physical

activity decreases even more with age (Brown & Gordon, 1987; Carmeli, et al.,

2012). When designing physical activity programs for individuals with Down

syndrome, it is important to adapt activities based on individual skills and

abilities.

The literature provides several reviews of physical activity participation for

individuals with disabilities. Rimmer and Rowland (2008) discuss how there is a

critical need for affordable and accessible community-based physical activity

programs for individuals with disabilities. Murphy and Carbone (2008) summarize

the positive effects physical activity has on individuals with disabilities. For

example, adapted physical activity promotes increased health and physical

fitness, inclusion into sport and recreational activities, and an overall

enhancement of well-being. Parents and healthcare professionals should take

note of these benefits and adapted programming should focus on providing

inclusive options for individuals with all types of disabilities. If more individuals

with disabilities had access to adapted physical activity programming, they would

19

benefit by increasing their physical and social functioning and ultimately

increase their overall quality of life.

Research on Special Olympics participation has shown that the

physical activity and social interaction associated with sport participation

to be highly beneficial for individuals with cognitive disabilities. For

example, a survey of both professionals and parents found that Special

Olympics provided an opportunity for social adjustment and life

satisfaction for athletes (Klein, Gilman, & Zigler, 1993). Another study

found a positive influence on self-worth in the athletes (Weiss, Diamond,

Demark, & Lovald, 2003).

Individuals with Down syndrome have an increased risk of limited

participation in everyday activities that includes physical activity. It is

important to identify barriers and facilitators to physical activity so that

programs can be designed to increase participation (Heller, Hsieh, &

Rimmer, 2002; King, et al., 2003; Mahy, et al., 2010). Common barriers

include lack of support and lack of accessibility. Common facilitators

include an activity that is fun and provides social support.

Despite the barriers to physical activity for people with Down

syndrome, some do participate successfully in activities when they are

made available. For example, two studies published in 2006 interviewed

individuals with Down syndrome who demonstrated successful

participation in extra-curricular activities, including physical activity. They

both found role modeling and parental/caregiver support to be a key factor

20

in successful participation (Heah, et al., 2007; Li, Liu, Lok, & Lee, 2006). This

was taken into account in the present study as the dance program provided

modeling from volunteers throughout the dance program.

The promotion of physical activity for individuals with disabilities has

gained noteworthy recognition over the past few years. Several researchers have

aimed to set specific guidelines for the design of physical activity interventions for

people with disabilities, with some guidelines specific for certain disabilities

(Drum, et al., 2009; Rimmer, et al., 2010; Stanish & Frey, 2008). Specific

guidelines for working with individuals with intellectual disabilities include using

motivational strategies and positive reinforcement, using low to moderate

intensity activities, making the activity fun and involving social interaction;

involving participants in the activity selection, using age-appropriate activities,

hosting activities in the community where there is opportunity for inclusion,

having plans to modify activities as needed based on the ability levels of all

participants, and having an evaluation process that measures activity-specific

goals (Stanish & Frey, 2008). All of these criteria were used when designing the

adapted dance program for this study and will be further discussed in chapter

three.

Chapter one briefly discusses the important of a behavior modification tool

when working with individuals who have Down syndrome. The use of such has

been shown to increase compliance and to some degree can help manipulate

participation (Bennett, Eisenman, French, Henderson, & Schultz, 1989; Lavay,

French, & Henderson, 2007; Lavay, Henderson, French, & Guthrie, 2012). Token

21

economy systems are a common form of behavior modification used in

adapted physical activity. This type of system involves operant

conditioning where participants receive positive feedback and/or rewards

for desired behavior. In the present study a modified token economy

system was used in which participants received a personal folder where

dancers checked off accomplished activities (Cone & Cone, 2011). Cone

and Cone (2011) explain how this strategy prompts participants to think

about what will need to be accomplished during the dance class.

Dance

Alpert (2011) defines dance as “the most fundamental of the arts,

involving direct expression through the use of body movements and

expressions” (pg. 155). Similarly, Crabtree (2011) defines dance as “an

individual and community art form that allows individuals to discover

themselves and the world around them, while also learning discipline-

based content, knowledge, skills, and application” (pg. 15). She goes on to

explain how dance is a physical activity and inclusive art form that can be

experienced by all individuals – regardless of ability level.

Dance provides many benefits to one’s health that are similar to benefits

of traditional fitness activities such as jogging, biking, or swimming. Dance can

provide a total body workout and may influence flexibility, muscular fitness,

cardiorespiratory endurance, balance, and joint proprioception (Alpert, 2011;

Quin, Frazer, & Redding, 2007). In addition to physical health, dance can also

22

influence psychological health components such as self-esteem and intrinsic

motivation to participate in physical activity (Quin, et al., 2007). Furthermore,

dance is a fun activity that may provide better adherence when compared to

other fitness activities. In addition to health benefits, dance also provides a social

benefit in that dancers communicate with each other when dancing (Alpert,

2011).

A qualitative study of young people involved in dance classes found that

dance enhanced respect and appreciation for physical activity and improved

confidence in both performing physical activity and interacting in social

relationships (Gardner, Komesaroff, & Fensham, 2008). In 2004, another

qualitative study explored the experience of individuals using wheelchairs in their

dance. Data analysis revealed four themes: (a) unconditional acceptance and a

sense of belonging, (b) a dream come true and a sense of accomplishment, (c)

beyond the wheelchair or using their wheelchair to express themselves through

movement and emotion, and (d) a stronger self both emotionally and socially

(Goodwin, et al., 2004). These very meaningful findings are similar to the findings

in this study.

A recent study demonstrated that individuals with Down syndrome benefit

greatly from a dance program (Jobling, Virji-Babul, & Nichols, 2006). A dance

program was designed specifically for individuals with Down syndrome using

Rudolf Laban’s movement analysis concepts (Laban, 1963). The four

components of Laban’s movement analysis that were used consisted of time,

space, weight, and flow. These four concepts were used to teach dancers a

23

“language of movement”. To do this, the dance program included activities

that allowed dancers to achieve the following: (a) an awareness of body,

space, and effort; (b) language of movement; (c) a confidence in

movement; and (d) increased participation in physical activity, social

interaction, independence, and creative expression (Jobling, et al.). By

including activities that focus on these four components, the goal was for

dancers to “communicate and interact with their peers, develop skills

necessary to problem-solve and learn new movement skills, and develop

the capacity for creative expression” (pg. 38).

This study was found after the conclusion of the dance program.

However, Laban’s movement analysis guidelines were unknowingly used

when planning the adapted dance program for the present study. For

example, a warm-up activity was included to help children become aware

of their body, a skill building section was also included to help students

become aware of their body in space, and dance stations were included to

help dancers focus on a variety of things such as dance language, effort

awareness, creative expression, and social interaction.

In addition to following the above guidelines, additional special

considerations had to be taken into account when planning for the

adapted dance program. Cone and Cone (2011) published a very helpful

article on teaching strategies for all dance abilities. In their article they

discuss several methods that can be used when teaching dance to

individuals with disabilities. Additional instructional strategies and dance

24

activities were found in two dance textbooks (Cone & Cone, 2005; McHugh,

2007). The dance program also utilized several volunteers who served as para-

educators, or teaching assistants, to provide one-on-one assistance to a few of

the dancers (Cone & Cone, 2011; Davis, Kotecki, Harvey, & Oliver, 2007).

Additional considerations are discussed in chapter three.

Summary

Individuals with intellectual disabilities face significant personal, cognitive

and social challenges in their daily lives that may influence social participation

and physical activity levels (Stanish & Frey, 2008). Dancing is one way of

interacting with others in a social setting that can provide both social participation

and physical activity. Dance, as an activity that promotes social interaction and

physical activity, offers researchers the opportunity to learn about the person with

Down syndrome and their family members’ perceptions about dance, physical

activity, and social interaction.

For this study an adapted dance program was developed specifically for

adolescents and young adults with Down syndrome. Although many individuals

with Down syndrome participate in dance, the lived experience of dancing has

not been the focus of past research studies. Therefore, this study aimed to

explore the lived experience among adolescents and young adults with Down

syndrome who participated in an adapted dance program. Furthermore, family

members of individuals with Down syndrome were given the opportunity to speak

25

about the effects an adapted dance program had on the daily lives of their

children/sibling.

26

Chapter III: Methodology

Introduction

Heideggerian interpretive phenomenology was the inquiry and analysis

method used in this study. Interpretive phenomenology aims to identify the

meanings of phenomena within a specific context. The phenomenon of interest in

this study was dancing in an adapted dance program for individuals with Down

syndrome. This method was chosen because qualitative research is particularly

useful when little is known about a specific phenomenon.

Research Design

This study used interpretive phenomenology, which is a qualitative

research design. Interpretive phenomenology was chosen as the method over

descriptive phenomenology because interpretive phenomenology seeks to find

shared meaning of experiences; whereas, descriptive phenomenology aims to

describe experiences (Lopez & Willis, 2004). This design allowed dancers and

family members to tell their story about an adapted dance program that met

semi-weekly for 1½ hours for a total of 6 weeks.

Sample/Population of Interest

The target population for this study was adolescents and young adults

with Down syndrome. Inclusion criteria for participation as a dancer included: (a)

individuals aged 12-30 years, (b) who were identified as having Down syndrome,

27

(c) who were willing and able to give informed consent or assent along

with parental/guardian consent, and (d) who were willing and able to

participate in the adapted dance program and miss no more than four

dance classes. Exclusion criteria included (a) not meeting the above four

criteria and (b) those who were already enrolled in dance classes. Family

member inclusion criteria included any relative who was willing to take part

in a focus group or telephone interview at the conclusion of the dance

program.

Selection of Subjects

Twenty dance participants were recruited for this study using a purposive

sampling technique and snowballing. Dancers were recruited from the local

community. Specifically, dancers were recruited from Down Syndrome Indiana,

Best Buddies, a local children’s hospital, and Special Olympics. Face-to-face

recruitment, emails, and flyers were used to help identify eligible dancers. The

recruitment flyer for the study can be found in Appendix B. Parents of potential

dancers were asked to contact the researcher by phone or email to obtain further

information about how to enroll in the study. Family members of dance

participants were approached at the beginning of the dance program and offered

the opportunity to participate in either a one-on-one interview or a focus group to

discuss the meaning of the dance program from a family member’s perspective.

28

Procedures

Study Approval and Informed Consent

Prior to recruiting participants for this study, permission was obtained from

the institutional review board at Indiana University Purdue University

Indianapolis. Before beginning the adapted dance program, the study was

explained to both dance participants and their family members and their

questions were answered. Adolescent dance participants, aged 12-17 years of

age provided written assent with parental/guardian written consent. Adult dance

participants aged 18-30 years of age provided either individual written consent or

written assent with parental/guardian written consent. This was determined by

discussing the consent/assent process with the accompanying parent/guardian

on the first visit. Verbal consent was again obtained prior to the one-on-one

interview. Family member participants provided written informed consent

immediately before the focus group or prior to the one-on-one interview. Verbal

consent was again obtained at the beginning of each focus group and one-on-

one interview.

There were minimal risks associated with this study. Possible risks to

dancers included musculoskeletal injuries such as ankle sprains during dance

sessions. Additionally, both the dancers and family members may have felt

discomfort when telling their story during an interview or focus group. To help

minimize discomfort during interviewing, dancers and family members were

informed that they could choose to not answer any of the questions during the

29

interview or focus group and/or withdraw from the study at any time with

no consequences. The benefits of this study for dancers included

acquiring unique motor skills via participation in a 6-week adapted dance

program that supported physical health and wellbeing, social interaction

with peers in a physical activity setting, and sharing their story about their

lived experience in the adapted dance program. A benefit for family

members was telling the story of their loved one’s participation in the

dance program.

All data for this study were kept in a locked and secured database.

All interviews were transcribed verbatim and de-identified, and all names

and locations were changed to pseudonyms.

Dance Program

A 6-week adapted dance program was designed specifically for

adolescents and young adults with Down syndrome. Dance classes met twice

per week for 1½ hours each. The researcher served as the program director;

there was a lead dance instructor, 4 assistant dance instructors, and 12

additional volunteers who assisted during each class. The large number of

volunteers was needed to provide both modeling and social support for dance

participants. It is important to note that the researcher for this study is

knowledgeable about both rehabilitation and kinesiology, trained in dance, and

trained in qualitative methods. She has a rich background in several dance

techniques and believes that dance is a fun activity that everyone can participate

30

in, regardless of ability level or dance skills. Additionally, all dance instructors for

this study were trained in adapted physical activity and also had experience

teaching dance.

During the first 5 weeks of the dance program, each week there was a

different theme, and the dance classes and dances styles corresponded to each

theme. Week 6 included a dress rehearsal on the first night followed by a recital

for family and friends on the second night. The weekly themes included Hip Hop,

Fiesta, Country, Jungle, and Hawaiian. The themes paralleled different styles of

dance including hip hop, Latin Cumbia, country line, African cultural, and

Polynesian, respectively. All dances were choreographed and/or modified

specifically for individuals with Down syndrome. This included the use of simple

movements as opposed to complex movements, single-beat rhythm as opposed

to half beat or double time, choreographing movements to words in the song

rather than the beats, avoiding extreme ranges of movement in all joints, and

avoiding all head movements.

To help increase adherence and minimize behavioral problems personal

folders were used as a modified token economy system by positively reinforcing

dancers’ behavior (Bennett, et al., 1989; Cone & Cone, 2011). Each dancer had

a personal folder in which they recorded their mood state before and after class

and checked off each of the activities they accomplished during two breaks and

at the end of each class. Dancers received stickers to use in their personal folder

as long as they completed the dance class activities. The personal folders also

31

helped to build routine and keep dancers on task. Items from the personal

folders can be found in appendix F.

At the beginning of the program all dancers received a t-shirt,

dance calendar, and a CD with all of the recital songs. The logo for the t-

shirts and the dance calendar can be found in appendices A and G,

respectively. Additionally, each week the researcher emailed dancers

and/or their family members a YouTube (www.youtube.com) link to the

choreographed dances for that specific week. Dancers were encouraged

to practice their dances at home using the CD and/or YouTube links.

Throughout the first 5 weeks dancers were learning choreography

for dances that would be performed during the recital. During week 1 the

dancers learned a hip hop routine to a popular pop song. During week 2

dancers learned a Cumbia routine that resembled Zumba Fitness

(www.zumba.com). During week 3 dancers learned two country line

dances, as well as a spiral dance where all the dancers connected hands

and were led by the lead dance instructor in various lines, shapes, and

spirals across the dance floor. During week 4 dancers learned an African

style dance that was performed in a circle. In week 5 dancers learned a

Polynesian style dance that included a variety of Hawaiian moves. An

interpretive, unchoreographed dance was also included throughout the

dance program that allowed dancers to “feel” the music and interpret the

music by moving in whatever way they felt compelled. The song used for

this dance was A Whole New World, from the movie Aladdin

32

(http://disney.go.com/disneyinsider/history/movies/aladdin). In total, dancers

learned eight dances that they then performed in a dance recital for family and

friends during the last dance class.

During each of the dances, the dancers were given props to use. Each

prop corresponded to the five weekly themes. Week 1 dancers used a ribbon,

week 2 dancers used maracas, week 3 dancers used bandanas, week 4 dancers

used wooden sticks, and week 5 dancers used leis. At the end of the program

the dancers received a personalized bag in which to take their dance props

home.

All dance classes followed the same format to help dancers develop a

familiar routine; this is important when working with individuals who have Down

syndrome (Stanish & Frey, 2008). The format for each class included the

following (a) review of the five basic dance class rules, (b) dance warm-up, (c)

skill building activities across the floor, (d) break, (e) learn new dance

choreography, (f) break, (g) dance activity stations and/or review prior dance

choreography, and (h) cool-down and reflection activity for the dance class.

Detailed lesson plans for each dance class can be found in appendix D.

At the beginning of each class the lead instructor reviewed the five basic

rules. These five basic dance class rules were adopted from Dr. Theresa Purcell

Cone, Associate Professor in the Department of Health and Exercise Science at

Rowan University (http://users.rowan.edu/~conet/). The five rules were (a) do

your best; (b) respect others; (c) be safe; (d) follow directions; and (e) share, be

kind, and help others. These five rules were chosen because it is important to set

33

guidelines for class participation when working with individuals who have

Down syndrome (Cone & Cone, 2005).

Immediately following the review of rules, the lead instructor led a

warm-up called seat-to-feet that focused on basic body movements aimed

at improving body awareness and rhythmic acuity (Bennett & Riemer,

2006; Jobling, et al., 2006). The same song was used to begin each class.

Dancers always began on the floor finding the beat of the music with

various body parts (e.g. pointing and flexing toes). Halfway through the

song dancers stood up and continued finding the beat with other parts of

the body (e.g. marching). By keeping the same song and activity, this

helped to create a routine for the dancers. Following the first song, two

additional songs/activities were included to complete the warm-up. For

example, an activity called animal interpretation was used where dancers

moved freely about the room interpreting various animals (e.g. elephant,

monkey, etc.). A full list of warm-up activities is included in weekly lesson

plans in appendix D.

The next activity, skill building, involved learning new dance steps

and techniques by travelling back and forth across the floor (i.e. from one

side of the room to the other side of the room). This allowed dancers to

gain an awareness of their body in relation to space. This section was led

by the lead dance instructor or one of the assistant dance instructors. The

dance steps and techniques taught in this section corresponded to the

weekly theme and were also part of the dance choreography that was

34

taught later in the class. For example, during country week dancers would walk

down to one side of the room doing heel touches and then walk back to the other

side doing toe touches. A more complete list of movements used during skill

building can be found in the weekly lesson plans in appendix D.

Following this section was a break during which dancers were rewarded

by checking off accomplished activities in their personal folder. During this time

dancers could also get a drink of water or use the restroom.

The next section was choreography during which dancers learned new

dance steps for one of the dances that would be performed in the recital. The

lead dance instructor led this section. YouTube links to the weekly dances can be

found in appendix E.

Following choreography there was another break during which dancers

checked off the choreography section in their personal folder. Again, dancers

were allowed to get a drink of water or use the restroom.

After the break the dancers were split into smaller groups and rotated

through a series of fun dance stations that focused on learning dance technique,

dance language, effort awareness, rhythmic acuity, and social interaction

(Jobling, et al., 2006). These stations were led by the assistant dance instructors.

An example of a station is Spaghetti Bowl where each dancer had a hula hoop

that was placed on the ground (Cone & Cone, 2005). The focus of this station

was to work on stiff and loose movements (i.e. effort awareness). When the

dancer was instructed to step inside of the spaghetti bowl (i.e. the hula hoop),

they were to move in loose movements to resemble cooked spaghetti. When

35

they were instructed to step outside of the spaghetti bowl, they were to

move in stiff movements to resemble uncooked spaghetti. All station

activities are included in the lesson plans in appendix D.

At the conclusion of each dance class, the lead instructor brought

all dancers back together and led a cool-down activity, which was similar

to the warm-up activities. Following the cool-down, a reflection activity was

included that allowed the dancers to reflect on the session’s activities.

Examples included having each dancer say their favorite activity in the

class, having dancers perform their favorite dance move from the class, or

having dancers draw their dancing face on a sheet of paper.

As dancers moved from activity to activity the lead dance instructor

used a visual activity schedule to show students the progression through

the class activities (Cone & Cone, 2011). The schedule was written on the

front mirror and included a list of all activities for the class. As each activity

was completed the lead instructor moved a marker down the schedule

until the end of class when all activities had been completed.

As stated in chapter two, there were a few additional special

considerations that influenced the design of the adapted dance program.

First, flexibility exercises were not included as most individuals with Down

syndrome have an increased range of motion in joints when compared to

individuals without Down syndrome (Angelopoulou, et al., 1999). Second,

as stated above, head and neck movements were avoided because some

individuals with Down syndrome are susceptible to atlantoaxial instability

36

(Pueschel & Scola, 1987). Third, although dancers were learning new dance

steps and dance choreography, the lead dance instructor did not focus on dance

technique. Rather, she focused on creative movement and did not stress that the

moves be done correctly. Dance technique was mostly learned by the use of

modeling with the lead instructor, assistant instructors, and other volunteers.

As stated previously, the dancers learned a total of eight dances that they

performed in a dance recital for family and friends on the evening of the last

dance class. At the conclusion of the dance recital, all dance participants

received a certificate of completion and were recognized in front of all dance

recital attendees. The dance recital announcement and certificate of completion

can be found in appendices H and I.

Interviews

Within 3 weeks of the final dance session, one-on-one unstructured

interviews were conducted with the dance participants to explore their experience

throughout the program. During this same time frame, small focus groups and

one-on-one telephone interviews were also being conducted with the dance

participants’ family members. All interviews and focus groups were unstructured

to allow dance participants and family members to share individual stories of their

experience throughout the dance program. The researcher led all of the focus

groups and one-on-one interviews. The lead dance instructor or an assistant

dance instructor assisted during the one-on-one interviews with dancers. This

was done to help dancers feel more comfortable by seeing a familiar face from

37

the dance program during the interview in hopes of helping dancers recall

more of their experience.

Dancer Interviews

Within 3 weeks of the dance program, dancers took part in one-on-

one unstructured interviews until all eligible dancers were interviewed. All

interviews were audio recorded and ranged from 5-30 minutes. Using

interpretive phenomenology, the interviews were face to face in either a

classroom adjacent to the dance studio or in the dancers’ homes. The

questions included open-ended, semi-structured statements to illicit the

lived experience that had occurred throughout the adapted dance

program. Specifically the researcher included the following statements in

all dancer interviews: (a) “tell me about your experience in the dance

program”, (b) “tell me what it means to be able to dance”, (c) “tell me how

dancing makes you feel”, and (d) “tell me about performing before your

family and friends in the dance recital”. As each dancer told their story,

additional questions arose throughout the interviews that were used to

probe dancers deeper into their individual experience. After all dancers

had been interviewed, data were considered to be saturated. This was

indicated by similar stories being told by dancers (Crist & Tanner, 2003).

38

Family Member Focus Groups and Interviews

Interspersed among the interviews with the dance participants, one-on-

one telephone and small focus group interviews with family members of

participants were also conducted. The one-on-one telephone and focus group

interviews were audio recorded and ranged from 30-60 minutes. The focus

groups were held in a classroom adjacent to the dance studio. The focus groups

used unstructured statements; however, some statements were based on

themes that were identified during interpretive data analysis of the dancers’ one-

on-one interviews. Each telephone interview and focus group began with the

statement “tell me about your family member’s experience in the dance

program”. Responses to this statement were then used to ask more specific

questions related to individual experiences.

Methodology/ Data Analysis

Interpretive phenomenological methods were used to capture the

perceptions of both dancers and their families. Interpretive phenomenology aims

to identify the meanings of phenomena within a specific context. The method

involved interpreting texts that included both the dance participants’ and family

member participants’ stories.

Once interviews were completed they were transcribed verbatim, verified

against the original recording, and de-identified. Audio recordings were destroyed

once this procedure was completed. All transcripts were then read multiple times.

De-identified data were analyzed for themes and patterns associated with

39

participants’ with Down syndrome and the participating family members’

perceptions of the meaning of the adapted dance program. Data analysis

management was assisted by use of MaxQDA (MAXQDA VERBI GmbH),

a computerized qualitative data management software. MaxQDA does

nothing to analyze the data, but rather assists the researcher in organizing

texts and themes.

The method of analysis in interpretive phenomenology actually

begins during the interview. Based on what a dancer or family member

said during interviews, the researcher quickly analyzed the information in

order to ask follow-up questions, or probes that allowed the individual to

delve deeper into their experience (Sloan, 2002). For example, if a parent

said their child danced at home the researcher would ask a follow-up

question such as “describe a time when this happened.” This process

would continue throughout the interview until recurring stories were being

told. This was done to encourage interviewees to delve deep into their

experience to find the true meaning of the dance program (Sloan, 2002).

Following the interviews, the researcher conducted a thematic

analysis. This analysis involved carefully reviewing both dancers’ and

family members’ stories, or transcribed interviews, to identify themes that

were believed to be significant and meaningful to the study participants

(Leonard, 1989). As stated in chapter two, hermeneutic interpretive

analysis was used. The overall goal of this type of analysis is to discover

meaning and to achieve understanding (Benner, 1985).

40

To help achieve neutrality, data analysis for this study was conducted by a

team of individuals rather than a single researcher. Identifying themselves as

members of the “Hermeneutic Circle”, the team consisted of the researcher, the

researcher’s mentors, and additional graduate students from a variety of related

disciplines. The lead dance instructor was also a reader of the narratives

providing an additional perspective for the researcher. The interpretive process

began with the identification of themes or “meaning”. In the first phase, individual

narratives were analyzed separately (Crist & Tanner, 2003). Each narrative was

read carefully and possible themes were identified. These identified themes were

then grouped according to similarity within each individual narrative. The second

phase involved the classification of shared experiences across all interviews (i.e.

themes). This phase involved identification of shared themes across narratives.

The initial grouped themes were combined with groups of themes from other

narratives. By identifying the common experiences/themes among dancers and

family members, shared meaning was identified. The qualitative data analysis

software MAXQDA (MAXQDA VERBI GmbH) aided in the organization of themes

across all transcripts. The final phase involved identifying strong examples, or

paradigm cases, for each shared meaning/theme. This was achieved by re-

reading individual narratives to identify individual stories that highlighted each

theme. It is important to note that this process was not linear, and that the

phases overlapped. After data analysis concluded, interpretations of the

identified themes were made and a second literature review was conducted

based on the themes that emerged (Crist & Tanner, 2003).

41

Chapter IV: Results

The purpose of this study was to explore the lived experience of an

adapted dance program. Using Heideggerian interpretive phenomenology, this

study explored the experience of a 6-week adapted dance program, as perceived

by both individuals with Down syndrome and their family members. The two

specific aims of this study were:

1. To illuminate the experience of an adapted dance program as

perceived by the dance participants.

2. To illuminate the experience of an adapted dance program as

perceived by family members of the dance participants.

The overarching goal of interpretive phenomenology is to identify meaning

and gain understanding of personal experiences. Heidegger used the term,

Dasein, or being-in-the-world, to describe personal meanings of events or

situations for individuals as they inhabit their own unique every day worlds.

These results illuminate the experiences of dancers and their family members at

the completion of a 6-week adapted dance program for individuals with Down

syndrome.

While it was anticipated that the dance program would increase physical

activity and social participation, the building of a connection of mind, body and

soul for dancers and family members was not anticipated. The following

describes the results of the study.

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Participants

A total of 20 dance participants and 22 family members (20 parents, 1

grandparent, and 1 sibling) were enrolled in this study. Age and gender of the 20

dancers, along with pseudonyms for the dancers and their family members are

presented in table 1.

Table 1: Pseudonyms and Age and Gender of Dancers

Dancer Gender Age (Years)

Family Member/s

Relation to Dancer

Lindsay Female 12 Cindy Mother Haley Female 13 Barbara Grandmother Leslie Female 13 Natalie Mother Sammy Female 13 Margaret Mother Alan Male 13 Tracy Mother Andrew Male 13 Maria Mother Dale Male 13 Sandy Mother Olivia Female 14 Emilia Mother Stephanie Female 16 Holly & Lauren Mother & Sister Jeff Male 18 Pam Mother Morgan Female 20 Evelyn Mother Rebecca Female 20 Susie Mother Amy Female 22 Kris & Bob Mother & Father Robert Male 22 Sally Mother Jenny Female 23 Laura Mother Chad Male 23 Vicky Mother Ryan Male 23 Alan Father Nicole Female 28 Catherine Mother Eric Male 29 Allison Mother Tyler Male 29 Faith Mother

Nineteen of the 20 dancers participated in a one-on-one interview. The

one dancer who did not participate was found to be insufficiently verbal at the

time of the interview; however, her mother participated in one of the small focus

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groups. A total of seven small focus groups and two one-on-one phone

interviews were held with family members.

Adapted Dance: Connecting Mind, Body and Soul

Interpretive phenomenological analysis of interviews and focus groups

revealed several themes related to participation in the dance program. The

succeeding paragraphs will highlight the emerged themes related to the dancers’

experiences as well as emerged themes related to the family members’

experiences. However, it is important to first present the overall pattern that was

identified by both dancers and family members. Thematic analysis across both

dancer and family member interviews and focus groups revealed a common

pattern, or shared meaning, of the dance program experience: adapted dance:

connecting mind, body and soul. After reviewing all of the themes, it was

interpreted by the researcher and confirmed by the Hermeneutic circle that

dancers connected in many ways throughout the dance program with the most

significant connection being a connection of mind, body and soul.

The overall pattern of adapted dance: connecting mind, body and soul

was supported by a number of subthemes described below. Dancer

interpretations revealed one theme – dancers experiencing a mosaic of positive

experiences. Family member interpretations can be summarized in the following

theme – family members experiencing pride in their loved ones. Pride in loved

ones was expressed as (a) enjoying seeing loved ones develop new

relationships, (b) observing increases in confidence and independence, (c)

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recognizing an emerging ownership of skills, (d) identifying an increase in

rhythm, and (e) underestimating potential in loved ones.

The Metaphor

Before dancer and family member interpretations are discussed, the

overall metaphor will be explained. Chapter two briefly mentions dance as an

embodying experience. After reviewing all dancer interviews, it was apparent that

all dancers were truly embodied and could express their self through dance. The

following dance quote from dance choreographer Maestro Hector Zaraspe

captures what many of the dance participants expressed during their interview

(Dance Quotes: Movement & Expression):

“Music is the language of the soul, dance is the language of the body.

Body and soul, music and dance conceive an instrument of expression through which the spirit

communicates.” -Maestro Hector Zaraspe

This dance quote was used as the metaphor because it explains how the

dancers were able to feel the music and dance to express who they are. The

subsequent paragraphs will breakdown each of the individual themes and explain

how they are all related to this metaphor. To better examine the two specific

aims, the interpretations are separated into the dancer interpretations and family

member interpretations.

Before discussing the connections with soul, it is important to define this

term. Initially soul was defined as simply a spiritual or religious connotation.

However, there are now multiple ways to define soul. In the current study soul

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was defined as a person’s inner being, heart or his/her essence. For example,

the quote above highlights how dancers were able to connect with their inner

being or essence while dancing throughout the dance program.

Dancers Experiencing a Mosaic of Positive Experiences

Individuals with Down syndrome often live happy lives. A recent survey of

individuals aged 12 and older who have Down syndrome revealed 99% of

participants self-reported as being happy, 97% liked who they were, and 96%

liked how they looked (Skotko, Levine, & Goldstein, 2011). Two studies

examining self-awareness found individuals with Down syndrome to have high

self-esteem and a positive sense of self (Cunningham & Glenn, 2004; Glenn &

Cunningham, 2004). Dancers’ reflections during interviews for this study revealed

a very similar response in that all dance participants responded in a positive way.

Dancers expressed their joy and happiness while dancing in a variety of different

ways.

During each of the dancer interviews, the researcher aimed to reveal the

lived experience of participating in the dance program. To explore this, she asked

the dance participants four specific statements during the interviews. In

particular, two of the statements revealed similar shared experiences. These two

statements were “tell me what it means to be able to dance” and “tell me how

dancing makes you feel”. Although the questions are different, they revealed a

shared meaning of an overall enjoyable experience for dancers. Dancers

responded to these two statements with a mosaic of positive experiences.

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An Overall Enjoyable Experience for Dancers

The following are a few examples of common responses by dancers when

asked these two statements. For example, Sammy, age 13, responded about

being happy.

“Happy…just exciting”, Sammy (13)

Similarly, Andrew, age 13, discussed how he found enjoyment in the

activity of dance.

“Had fun…It was great dancing around”, Andrew (13)

Stephanie, age 16, described how she not only had fun, but how she was

exercising. She could notice that in addition to dancing, she was working out and

using her muscles.

“It was fun…toned up”, Stephanie (16)

Eric, age 29, was one of the older dancers. He went on and on during his

interview about how he just loved to dance because it was fun.

“I like to dance…because it is fun…I just dance and have fun”, Eric (29)

One of the older, higher functioning dancers – Nicole, age 28, talked about

how dancing makes her feel better about herself and helps her when she is sad.

She also explains how dance for her helps to relieve stress. Furthermore, she

delves deeper and explains how she assumes a leadership role when she is

dancing. This was very apparent throughout the dance program as Nicole would

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help the younger dancers during the dance classes. She would help with things

such as finding their spot during a dance and learning the specific dance moves.

“…and it also makes you feel better about yourself…Happy, not stressed out, and helps me

when I’m sad. I also learned leadership…I think being able to dance is always about helping each other”,

Nicole (28)

All of these responses illustrate how the dancers truly enjoyed themselves

when they were dancing. It is also evident that dancing made them feel joyful or

happy. Vicki Baum, an Australian novelist, once said “there are short-cuts to

happiness, and dancing is one of them” (Dancing Quotes). This is very apparent

in the dancers’ experiences in the adapted dance program.

As stated in the introduction, all individuals with Down syndrome have

some degree of cognitive impairment. A few dancers were able to give more in-

depth responses compared to other dancers. For example, Lindsay, age 12,

responded specifically about one of the styles of dance (interpretive) and then

explained in more detail how dancing made her feel.

“I liked the interpretive dance…’cause, it’s cool and fun. Dancing made me pretty, very happy and pretty

tired…and sweaty”, Lindsay (12)

Lindsay was able to share more of her experience by explaining that

dancing made her feel pretty. However, she also talked about how she was

sweaty and tired. She also talked about how the interpretive dance was her

favorite. This dance was a favorite for a lot of the dancers. In this dance the

dancers used a ribbon and were told to interpret the music (A Whole New World,

from the movie Aladdin) by moving in whatever way they felt compelled to move.

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The dance quote below explains why this specific dance was a favorite for

Lindsay and many others (Dance Quotes: Movement & Expression).

“Saying “I dance” would be an understatement and an insult to my life.

I express. I move. I create. Every dance movement I make helps me orient myself in reality,

my own emotions, and my own body.” -Joseph Baldock, professional dancer

This quote helps explain how the dancers felt during the interpretive

dance. This dance allowed the dancers to let go and be free – to interpret the

song by moving creatively in any way they felt compelled. Delving deeper into the

meaning of this type of dance revealed that interpretive dance allowed the

dancers to connect with their inner self and express their true being. The

following dance quote by a professional dancer explains how dancing is not

about having perfect technique (Dance Quotes: Dance & Spirituality). Rather, it is

about feeling your soul. It may have been that the interpretive dance was an

avenue for dancers to connect their mind, body and soul.

“Someone need not be perfect to be a great dancer – feeling a soul is more important than what the body

can do.” -Marcia Haydee, professional dancer

For Amy, age 22, dancing was more than movement – it led her to

become more comfortable with her true self, which is evidenced by her feeling of

increased confidence. Confidence can be thought of as being comfortable with

oneself and outwardly expressing their inner being or essence.

“I think it gave me a chance to build my confidence back.”

Amy (22)

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Haley, age 13, explained how she thought she was the most talented

woman ever and how dancing in the recital made her work to be better for other

people. This response coincides with the findings from three studies of self-

perception in individuals with Down syndrome. On average, individuals with

Down syndrome have high self-worth and a very positive self-awareness

(Cunningham & Glenn, 2004; Glenn & Cunningham, 2004; Skotko, et al., 2011).

“It was great…awesome, great…I’m the most talented woman ever…I had a good time working out…I

worked my butt off when I did it…It made me try to be great for people”,

Haley (13)

Haley’s response was a little different from other dancers in that she

focused more on how her dancing made other people happy (e.g. her

grandmother). This, in turn, caused Haley to work harder to do a good job

performing in the dance recital.

For the dance participants, the context of participation in an adapted

dance program proved an interesting context when you think about Heidegger’s

concept of embodiment. His concept explains how our bodies move and interpret

the world we live in (Leonard, 1989). Dancing in itself has been described as an

embodying experience. Researchers Block and Kissell (2001) stated “both

literally and metaphorically, dance embraces what it is to be an embodied

subject, what it is to know the world and to express our own presence here in the

only way human beings can” (page 14). Additionally, the dance quote below by

choreographer Ruth St. Denis really speaks one of the dancer’s explanations of

her dance experience (Dancing Quotes).

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“I see dance being used as communication between body and soul, to express what is too deep to find for

words” -Ruth St. Denis, modern dance pioneer/dance

instructor It is apparent in Rebecca’s, age 20, interpretation of her dance

experience that she feels the same way. Dance is an avenue for her to be

herself, to connect with her soul, and to fully express her feelings. Furthermore,

Rebecca was able to give a very meaningful response to these questions when

she explained what dancing meant to her and how dancing made her feel. As

you can see in the quote below, Rebecca states that dancing allowed her to feel

her inner being, or as she defines it – her soul.

“I had so much fun…and I love it…I love to dance…and I love spot light on me…feel like

amazing, happy…it was fun…I feel like soul in me…it’s just me…I can feel like grace or

something…and pretty…and be myself to the music.”, Rebecca (20)

A publication titled Dance Movement and Spirit discusses the importance

of dance in connecting with the soul. LaPointe-Crump (2006) states “dancers

absorb an exciting spiritual component that energizes them and makes them

keenly aware of the raw materials of dance” (pg. 77). Rebecca’s experience is

just this. She feels her heart and soul within her and because of this she feels

graceful. Her soul becomes one with the music when she dances and she is able

to express her whole self. There is no doubt that Rebecca experienced the

soulful component of dance that LaPointe-Crump talked bout.

Heidegger introduced the concept of authenticity to explain that someone

can become themselves existentially (Heidegger, 1962). To do this, however,

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special circumstances must occur – one cannot be their authentic self at all times

(Mansbach, 1991). For one to express their authentic self, they must be able to

fully embrace the moment and connect with their soul. It is evident that dancing

was an experience that provided an opportunity for individuals with Down

syndrome to express their true authentic self. Dancing allowed dancers to be fully

embodied and engaged in that moment in time, ignoring all outside distractions.

The dance quote below explains why dance is a wonderful avenue for individuals

to express their true authentic self (Dance Quotes: Movement & Expression).

“Learning to walk sets you free. Learning to dance gives you the greatest freedom of all: to express with

your whole self the person you are.” -Melissa Hayden, professional dancer

This quote is powerful for dancers in that it tells the story of how a dancer

is able to express his or her true self through movement. The dancers in the

adapted dance program felt this freedom when they moved their bodies while

dancing.

Although many of the dance participants had limitations in vocabulary and

communication skills, some were able to interpret their experiences with the

dance program. Others could not articulate and/or express such sophisticated

ideas. Despite this, the dance program was something that had significance in

their lives, and was a positive embodying experience that allowed them to

connect their mind with their body through the movement of dance that further

allowed a connection with their soul. Through dancing they were able to express

their true authentic self.

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Family Members Experiencing Pride in their Loved Ones

Raising a child with a disability adds stress to families and often creates

many challenges. When compared to families with other disabilities, families of

children with Down syndrome tend to cope better and report less stress and

fewer challenges (Cahill & Glidden, 1996; Hodapp, 2007). However, they do

experience increased stress and challenges when compared to families without

children with disabilities. Family member responses during focus groups and

one-on-one interviews for this study were overall very positive. Family members

expressed pride in their loved ones in multiple ways.

During each of the family member focus groups or one-on-one interviews,

the researcher aimed to reveal the lived experience of observing a loved one’s

participation in the dance program. To explore this, she began by asking the

family members to talk about their loved one’s experience in the dance program.

Answers to this statement prompted the researcher to ask deeper, more probing

questions to learn more about individual experiences of family members.

The overall theme that emerged from family member interpretations was

experiencing pride in their loved ones. This was demonstrated in the following

ways (a) enjoying seeing loved ones develop new relationships, (b) observing

increases in confidence and independence, (c) recognizing emerging ownership

of skills, (d) identifying an increase in rhythm, and (e) underestimating potential in

loved ones.

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Enjoying Seeing Loved Ones Develop New Relationships

The first way family members experienced pride was by enjoying seeing

their loved ones develop new relationships. This revealed a shared meaning for

family members – seeing their family member create new friendships. A survey

of individuals with Down syndrome aged 12 and older revealed that 86% of

individuals felt they could make friends easily (Skotko, et al., 2011). The adapted

dance program provided a social opportunity that allowed dancers to easily form

new friendships. The adapted dance classes were also good for the souls of

parents who enjoyed seeing their children interacting in new ways.

Developing friendships and relationships is a very important

developmental phase in any child’s life. However, this can sometimes be a

challenge for children who have disabilities and heartbreaking for their family

members. This phase of development may be delayed or missing for individuals

with disabilities. According to the Developmental Stages of Erik Erikson, a

German Freudian ego-psychologist, developing intimacy is a very important step

and should be the focus over isolation (English, 1999; Schlesinger, 2000). For

example, a study of young adults with Down syndrome found friendship and

intimate relationships to very important in the lives of those with Down syndrome

(Smith, Christianson, Warren, Lemasters, & Patterson, 2001). It appears that

family members felt the developmental needs of the dancers with Down

syndrome in the current study were the similar as those of their peers. The

following observations from family members showed the adapted dance program

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was an opportunity for socialization with peers that can help their loved ones to

achieve this important developmental stage.

Tracy, mom of Alan age 13, specifically enjoyed how Alan was interacting

with so many other kids who had Down syndrome. This was the first opportunity

for Alan to interact with such a large number of individuals with Down syndrome.

“I think it was a great experience for him, he’s never been with that many kids with Down syndrome

before.” Tracy, mom of Alan (13)

Furthermore, a recent study on leisure activity and friendship in children

and adolescents with Down syndrome found one-third of the parents reported

that their child had no friends. However, one-half reported their child as having

two or more friends. Parents reporting two or more friends most often had

children who were higher functioning allowing some independence. The overall

findings of the research study suggested that children and adolescents with

Down syndrome tend to live sedentary, self-contained lives (Oates, Bebbington,

Bourke, Girdler, & Leonard, 2011). The adapted dance program was one way for

adolescents and young adults to develop new friendships. In the present study,

several family members reported an observation of an increase in social

interaction and a development of friendships with other dancers as well as the

volunteers.

Holly, mom of Stephanie age 16, was very excited for Stephanie to

develop friendships with other children who have Down syndrome. This was also

Stephanie’s first experience with such a large number of individuals who have

Down syndrome.

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“It was wonderful for her to be with, actually, other kids with Down syndrome. ‘Cause she doesn’t know

that many kids with Down syndrome. And, I was excited for her to be able to start relationships…”

Holly, mom of Stephanie (16) The two quotes above highlight parental desires for programing that

allows their child to be with other individuals with Down syndrome. This is an

interesting perspective when thinking about traditional guidelines for adapted

physical activity. Traditional guidelines suggest inclusive physical activity

(Stanish & Frey, 2008). Could it be that parents actually desire the opposite?

Two parents discussed how they enjoyed seeing the interactions between

all of the dancers. This is important to note because a lot of individuals with

Down syndrome lack social participation (Oates, et al., 2011). This adapted

dance program provided an avenue for social interaction with other individuals

who have Down syndrome as well as individuals who do not have Down

syndrome (i.e. the volunteers). Sally, mom of Robert age 22, really enjoyed

seeing her son as part of a group.

“It was fun to see them being made to feel part of group.”

Sally, mom of Robert (22)

As individuals with Down syndrome leave school, it is often hard to find

community-based programming that provides an opportunity for social interaction

(Jobling, Moni, & Nolan, 2000). The adapted dance program in this study

provided an opportunity for dancers to connect with other individuals with and

without Down syndrome. Similarly, a dance studio in Massachusetts, that holds a

weekly adapted dance class, has a mission that includes improving social skills

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for dancers. The director of the studio notes how the dance classes encourage

social interaction and the development of new friendships. All dancers,

volunteers, and instructors receive a t-shirt that states “Adaptive Dance, Friends

for Life” (Bernstein, 2012). Vicky, mom of Chad age 23, delves a bit deeper into

her observation and explains how exciting it was to see all of the kids interacting.

She talked about the spiral dance where all of the dancers were holding hands

and were led throughout the dance floor by the lead dance instructor. This

experience was so meaningful to Vicki that it brought tears to her eyes.

“Just to see the connection with all the kids. I thought that was cool. It made me cry.”

Vicky, mom of Chad (23)

Observing Increases in Confidence and Independence

One of the most common interpretations shared among family members

was having a sense of pride while observing an increase in confidence and

independence in their loved one throughout the dance program. For example,

Tracy, mom of Alan age 13, discusses how both she and her mother noticed an

increase in Alan’s confidence during the dance program. Dance provides an

opportunity for individuals to be fully embodied in the moment allowing for the

true self to surface. This may very well be demonstrated as an increase in

confidence.

“I think he had more confidence. And, sometimes my mom would notice more confidence”

Tracy, mom of Alan (13)

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Similarly Kris, mom of Amy age 22, discussed how she thought Amy had

gained confidence during the dance program. This is important, because Amy

also talked about how dance provided her an opportunity to gain her confidence

back. This is an example of triangulation in qualitative research (Annells, 2006).

This is also an example of strong consistency in this qualitative research study.

Similar stories were told by both mother and daughter.

“I think it gave her more confidence.” Kris, mom of Amy (22)

Lauren, sister of Stephanie age 16, talked about how this was the first

time she has witnessed her sister displaying full confidence in front of a crowd. It

was a neat experience for Lauren to see her sister fully enjoying a performance

while being her true self.

“It’s probably one of the few times that I’ve actually seen Stephanie in front of a crowd and smiling.”

Lauren, sister of Stephanie (16)

Similar to confidence, several family members recognized an increase in

independence in things such as getting ready for dance class, and also an

increase in motivation to attend the dance classes compared to other physical

activities such as Special Olympics. Several family members noted how the

dancer would remind them about dance classes to make sure they didn’t miss it,

and a few of them discussed how some of the dancers still wanted to keep going

to dance classes even after the conclusion of the dance program. Vicky, mom of

Chad age 23, talks about how excited Chad was to write dance in his calendar.

After the program had finished Chad would still ask his mom about returning to

dance. This demonstrated how meaningful the dance program was for Chad.

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“Well, he really loved it. He was anxious to go… And, he really looks forward to it. He had to right down right

away what days he was going…He still asks me every once in a while, can I go back to dance?”

Vicky, mom of Chad (23) Similarly, Susie, mom of Rebecca age 20, states how upset Rebecca was

when the dance program was over. This is to be expected, as Rebecca was the

dancer who discussed feeling her soul during dancing. For Rebecca, dance was

more than dancing – it was an escape, a time to connect with her soul and

express herself fully.

“She almost cried when it was over.” Susie, mom of Rebecca (20)

Allison, mom of Eric age 29, talked about how Eric made dance a priority

in his schedule and would skip other obligations to attend dance. This is another

illustration of how much the dance program meant to dancers. It also speaks to

the high adherence that occurred throughout the dance program. They truly

looked forward to attending each and every class and were sad when the

experience was over.

“He was very motivated to participate. In fact, skipped other things so he could be sure to get here, so…”

Allison, mom of Eric (29)

Barbara, grandmother of Haley age 13, also talked about how Haley knew

when it was time for dance. Haley was often ready to go early. Also, she

speculated that Haley may transfer the skills she learned in the dance program to

social events in the future. This is important, because social participation for

individuals with Down syndrome can sometimes prove challenging. It is

interesting to see that Haley’s grandmother believes the experience in the dance

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program will transfer to future experiences. This can be seen as an example of

applicability of the findings.

“Haley enjoyed it. I mean at 4 o’clock she is saying, is it time to leave yet? I think Haley will have more fun at this year’s Down syndrome Christmas party, because

she watches them dance…and, I think that maybe this year she’ll, she’ll go out and try it.”

Barbara, grandma of Haley (13)

Developing independence in individuals with Down syndrome is

something that family members often struggle with (Rodrigues & Dupas, 2011).

Although young people with Down syndrome report having friends, parents

sometimes worry about whether or not their child will have the social skills and

independence needed for such relationships with peers (Cuckle & Wilson, 2002).

Increases in independence for children with Down syndrome is very important for

families (Nunes & Dupas, 2011). Several family members in the present study

explained how the adapted dance program provided an avenue that allowed

dancers to increase their independence. This increase in independence is

something that family members thoroughly enjoyed watching.

“But, this was the first physical activity that I didn’t have to make her go to toward the end. Even Special Olympics. She was always ready and always knew it was scheduled...And her confidence level changed, we noticed over the course of the [dance program]”

Holly, mom of Stephanie (16)

Holly, mom of Stephanie age 16, goes beyond the increase in confidence

and discusses how this was the first physical activity that Stephanie was actually

motivated to attend. This is another example of high adherence to the dance

program. Going beyond the motivation to attend the dance classes, Stephanie

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was also motivated to do other physical activity. In fact, her mom notes how she

started trying other physical activities.

“And, she was on the treadmill last night at 11:30 at night. On her own. No one asked her to do it. So, I think she has confidence that she can be physically

active.” Holly, mom of Stephanie (16)

This is important because physical activity can sometimes be a challenge

for individuals with Down syndrome (Barr & Shields, 2011). The adapted dance

program was specifically designed for individuals with Down syndrome and also

followed the guidelines for adapted physical activity (Bennett, et al., 1989; Mahy,

et al., 2010). This provided dancers a great opportunity to increase physical

activity while increasing their social participation.

Emilia, mom of Olivia age 13, was thrilled to have Olivia excited about

attending the dance classes and taking ownership in things such as getting her

shirt ready. This was a very rewarding experience for Olivia because she had

never experienced anything like this before with Olivia.

“…and it was nice to see the independence as far as getting her shirt ready, you know…and, just secondly, knowing that she took ownership, I think was exciting

for us. Because she was able to show them [the dances] with her siblings, and for her to say, “this is

the way we do this dance,” you know… we have never experienced that before. I know she thoroughly

enjoyed it because she reminded us about dance…First thing in the morning, Mom, you forgot

dance. Olivia, no, we just started our day we haven’t forgotten.”

Emilia, mom of Olivia (13)

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Faith, mom of Tyler age 29, also touched on how much Tyler enjoyed the

program. She also talked about how much pride he had in his dancing. He was

also very upset that dance was over.

“He loved it so much and he had to show everybody the video [of the dance recital] of it at the family

vacation. And, yesterday we were doing his calendar for the month and he was not real happy with me that I did not put down dance on there. He wanted dance

on there. So he absolutely loved it.” Faith, mom of Tyler (29)

Sandy, mom of Dale age 13, talked about how Dale would listen to the CD

of the dance songs when they rode in the car. He was similar to other dancers in

that he also would count down the time until dance each week. This is another

illustration of how much the dancing meant to the dancers.

“We had the CD, had it in the car, and he loved having that and digging on the songs. He would just like count down how many days until [dance

class]…” Sandy, mom of Dale (13)

Similarly, Pam, mom of Jeff age 18, also talked about how Jeff was

excited to attend the dance classes. Yet, another example of the motivation to

attend the dance classes.

“He liked it; he wanted to come every night.” Pam, mom of Jeff (18)

Recognizing an Emerging Ownership of Skills

The third way family members experienced pride was when they

recognized an increase in ownership of the dance experience. Several family

members talked about how the dancers would show the dances to family and

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friends. Others discussed how it was an activity that they can do on their own. In

general, family members were recognizing their loved ones experiencing an

emergence of skills. Parents recognized this change at the end of the program.

Their children had gained skills they did not know they had before. This is

important for family members because this was most likely something new that

they were observing in their family member. This experience allowed the dancers

to take pride and ownership in something that they could do on their own. This in

turn could explain the increase in maturity that Alan, dad of Ryan, age 23,

expresses.

“I think that provided some opportunities for growth in terms of maturity. Because, they had responsibility and they would take that responsibility on to make

their own improvement.” Alan, dad of Ryan (23)

Margaret, mom of Sammy age 13, talked about how Sammy would show

anyone and everyone the dances she had learned in the dance program. During

the interview with Sammy she showed the researcher a picture of her performing

one of the dances in a talent show at a local week-long camp for children with

Down syndrome.

“…she showed all of her brothers and sisters and neighbors and anyone [the dances]…”

Margaret, mom of Sammy (13)

Maria, mom of Andrew age 13, talked about how she enjoyed watching

Andrew dance at home because it was a skill that he could do individually. It was

a skill he could practice by himself at home. However, she also talked about how

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Andrew’s siblings would ask him to go to his room because he would just keep

repeating the same songs over and over again – country was his favorite.

“It’s something they can do at home, something they can do on their own…played his CD in the kitchen computer. And, his siblings would go, “Andrew,”

‘cause a couple he was just pushing it to repeat. “All right all ready, take that to your room”…but he would take it to his room and he would dance and practice.

And, that was kind of neat to see, ‘cause the only other he will really practice on his own is basketball. So, I think it was neat that he had something else he could do on his own. More of an individual…Andrew absolutely loved it. I mean, he couldn’t wait and he would tell me, it’s Tuesday, I have dance tonight.”

Maria, mom of Andrew (13)

Identifying an increase in Rhythm

A common observation from family members was an increase in rhythm

that dancing provided. Individuals with Down syndrome often participate in

adapted physical activity. However, dance is a physical activity that provides a

unique experience where dancers must listen to and feel the rhythm in music

(Sooful, et al., 2010). Family members discussed not only how their rhythm

increased, but also how they could tell they were not just moving their bodies, but

also using their minds. In addition to dancing to the rhythm of the music, dancers

learned new dance moves during every class. These moves had to be

memorized and recalled in each of the subsequent dance classes. Susie, mom of

Rebecca age 20, noted how the dance program required dancers to use

cognitive skills in addition to just moving. This is an interesting concept, because

traditional physical activity does not typically require much mental stimulation.

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“And, it’s a physical activity that’s not just physical, it also includes, you know, you have to use your

mind…” Susie, mom of Rebecca (20)

Very similar, Sally, mom of Robert age 22, also discusses how the

dancing tapped into using cognitive skills. This is an interesting observation

because dance has been shown to increase brain activity in areas such as

memory and multitasking (Alpert, 2011).

“…physically when anybody acquires something really new, I think it does something with your brain.”

Sally, mom of Robert (22)

Barbara, mom of Haley age 13, also noted how she loved the exercise but

also how much brain stimulation was going on. Dancing is a physical activity that

requires individuals to memorize specific dance step and then later recall the

order of the dance steps. This, in turn, challenges the brain in ways that

traditional physical activity does not.

“Oh, I think it is really good for them. Not only do they get the exercise, they had to use their little brains to

think and they did make an effort. Plus the exercise. I think it’s great”

Barbara, grandma of Haley (13)

Cindy, mom of Lindsay age 12, goes a step further and compares the

dance program to physical therapy. This is family member observation is not

surprising because dance is often used as a type of movement therapy for

individuals with Down syndrome (Dupont & Schulmann, 1987).

“And, I loved, you know, from a physical therapy standpoint, the activity they got, the movement they

got. Fine motor skills.” Cindy, mom of Lindsay (12)

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Tracy, mom of Alan age 13, notes how she observed an increase in

rhythmic acuity in Alan. This is an important skill for all children to learn, and

participation in a dance program may provide an avenue for increasing rhythmic

acuity.

“Alan doesn’t really clap in time to the music or anything, but I think it was beneficial to him to have body movement to the music. He probably grew in

that way a little.” Tracy, mom of Alan (13)

Holly, mom of Stephanie age 16, also commented how Stephanie had

gained rhythmic acuity and could she could now clap to the beat of the music – a

sign of rhythmic acuity.

“Which I notice she’s better than that. Some of the clapping…there are things that she could not do

before.” Holly, mom of Stephanie (16)

Underestimating Potential in Loved Ones

The final, and arguably the most meaningful shared experience of family

members was that they underestimated their loved one’s potential. The dancers

in the dance program far exceeded family member expectations. After reviewing

the family member comments below, Heidegger’s fifth characteristic of

personhood comes to mind – the person in time. This is important because

Heidegger would argue that family members’ past experiences have some

influence on expectations of their loved one who has Down syndrome.

Heidegger’s fifth characteristic of personhood explains that a person’s past,

present and future are inseparable. They all influence who a person is. For

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example, Sally, mom of Robert, age 22, dwells on certain past experiences that

for her have shaped a sense of what Robert cannot do rather than focusing on

the positives of what he can do.

“I don’t know. There’s, (sigh) there’s always a kind of a (sigh, sigh)…I don’t know how to say this, but a, you

know, you are proud of them for what they have accomplished and you are also very aware of much they are not able to do, you know. So, watching a

performance is kind of, nnnnnnnn. You know, like I didn’t invite anybody else…any of the friends of the

family… And, so it’s not that I don’t think he can learn. But, you know, he learns slowly and building slowly.”

Sally, mom of Robert (22)

Similarly, Allison, mom of Eric, age 29, is reminded how she all too often

underestimates individual capabilities in individuals with Down syndrome. She

goes on to explain how she was surprised at Eric’s level of competence and will

use this experience as a reminder not to avoid activities for him because she

thinks he cannot do them. Although Allison’s remarks are similar to Sally’s, they

differ in that Sally’s is more negative focusing on what Robert cannot do,

whereas Allison’s is very positive focusing on what Eric can do. This is a very

important concept in the field of adapted physical activity. Specialists in this area

must focus on what an individual can do rather than what they cannot do. This is

how activities are adapted – to what an individual can do.

“And, as usual, another thing I always learn is I probably under-estimate what people can do. I was very impressed, and probably this is something Eric

(29 y/o) knows how to do, and a lot of the participants could do, and maybe just had not had prior

opportunities…I felt a sense of pride in Eric’s accomplishment and just in his enjoyment of the whole activity. That, it’s always fun to see people having a good time. Getting along and enjoying

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something very difficult. And, again, I was surprised at his level of competence. So, it’s a good reminder to just make sure you don’t not do things because you

don’t expect people to be able to it.” Allison, mom of Eric (29)

Two additional parents talked about how they were amazed at how

together the dancers were during the dance recital. All the way up until the day of

the recital, both of these parents had their doubts, but were pleasantly surprised

during the recital. Alan, dad of Ryan age 23, was surprised and the performance

during the recital exceeded his expectations.

“It was a joy for me because everybody was having a good time, and so how can you not be happy…I’m not surprised that when they were rehearsing, you know, they were picking up things, but I was really surprised

at how you had them doing everything together the night of the performance…they did exceed my

expectations.” Alan, dad of Ryan (23)

Cindy, mom of Lindsay, stated how she was very skeptical even up until

the rehearsal for the recital. However, she too was surprised by the performance

during the recital.

“I mean, even the day before, when they were practicing, I was wondering how they would do in the recital, but really I mean, when the gun went off for the recital, they were right there and they put on a

show…it was very heart-warming to watch.” Cindy, mom of Lindsay (12)

This underestimation of loved ones with Down syndrome by family

members has been demonstrated once before in the literature. Bhattacharya and

Sidebotham (2000) found that parents rated their child’s behavior as more

impaired when compared to primary care providers.

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Heidegger’s ontological perspective centers on what kind of human beings

we are and how the world around us influences who we are. Intelligibility is a

term that he used to help explain what makes Dasein (being human) different

from non-humans (other forms of life and objects). He also states that we are

thrown into our world and that our history is always before us and this limits our

possibilities (Heidegger, 1962). How does Heidegger’s philosophical perspective

apply to humans with Down syndrome?

All people with Down syndrome have some degree of cognitive

impairment, but their intelligibility of the world differs on a continuum from those

with profound impairment who require constant care and supervision to those

who are able to live communally with a caretaker and hold a job. We humans

without Down syndrome have to be careful not to limit their possibilities. The

family member responses above described how the dance program offered their

adolescents and young adults possibilities.

Summary

As stated above, the overall pattern from both dancers and family

members was adapted dance: connecting mind, body and soul. In Heidegger’s

language, this is a three-fold. Just like past-present-future, the mind-body-soul

three-fold cannot be separated from each other but are continually providing

feedback and fore-grounding for both the dancers and their family members

(Diekelmann & Ironside, 1998). The dance program provided dancers an

opportunity to express their authentic self while experiencing moments of full

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embodiment in the connection of their mind, body and soul. Alpert (2011) states

“through the centuries the healing nature of dance and music were informally

recognized for their mind-body restorative capability to make one “whole” again,

but was never acknowledged formally until recently” (pg. 155). It is evident that

this adapted dance program was a very meaningful experience for not only

dancers, but also family members. While dancers experienced the connection of

mind-body-soul, family members recognized the importance of this connection in

their loved one.

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Chapter V: Discussion and Conclusions

The purpose of this study was to explore the lived experience of

participation in an adapted dance program for individuals with Down syndrome

and their family members. Using interpretive phenomenology, thematic analysis

revealed an overall pattern of adapted dance: connecting mind, body and soul.

The primary theme from dancer interpretations was expressing a mosaic of

positive experiences. The primary theme from family member interpretations was

experiencing pride in their loved ones. A total of five subthemes emerged from

family members including (a) enjoying seeing loved ones develop new

relationships, (b) observing increases in confidence and independence, (c)

recognizing an emerging ownership of skills, (d) identifying an increase in

rhythm, and (e) underestimating potential in loved ones.

The findings of this research illuminate the experience of an adapted

dance program for individuals with Down syndrome. The results of this study not

only describe what it means to be involved in an adapted dance program, but

they also explain what the experience meant to both dancers and family

members. As one can see, the overall experience was very positive for both

dancers and family members. Dancers became embodied while dancing and

were able to express their true authentic self. Family members experienced a

great deal of pride in their family member by observing loved ones both during

dance classes and at home. Parents in particular were enthused to see their

child grow in terms of independence and ownership of an activity. Several

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parents also noted how they loved the social interaction with other individuals

who had Down syndrome. Furthermore, family members observed an increase in

skills such as coordination and rhythmic acuity.

The findings of this research study can influence future dance

opportunities for individuals with Down syndrome. Specifically, dance instructors,

physical educators, and rehabilitation specialists who develop adapted physical

activity programs for young people with Down syndrome will benefit. Knowing the

lived experience of an adapted dance program for individuals with Down

syndrome and their family members can help adapted specialists create future

programming for this population.

Discussion

Adapted dance for individuals with Down syndrome is a topic that has

received minimal attention. Therefore, very little supporting literature exists

related to the findings of this study. To the researcher’s knowledge, this was the

first study that explored the lived experience of an adapted dance program for

adolescents and young adults with Down syndrome.

Phenomenological interpretation of narratives revealed an overall pattern

of experiencing a connection of mind, body and soul. Both dancing and

observing dance provided an opportunity for dancers and family members to be

fully embodied in an experience. As stated in chapter one, dance itself has been

explained as an embodying experience (Block & Kissell, 2001). A previous study

on dance and the lived experience revealed one performer’s experience as an

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embodying experience of time and space that revealed a new world where the

performance occurred (Davis, 2000). The results of this study showed similar

findings for the dancers with Down syndrome.

The adapted dance program for this study was designed specifically for

individuals who have Down syndrome (Cone & Cone, 2011; McHugh, 2007).

Unknowingly, the dance program actually followed Laban’s four movement

analysis concepts of time, space, weight, and flow (Jobling, et al., 2006). Laban’s

concepts provided dancers a framework to learn dance. Further, his concepts

enabled dancers to express a language of movement. One instance that this was

observed was when dancers performed the interpretive dance to A Whole New

World. This dance was not choreographed and dancers were encouraged to feel

the music and use creative movement to express themselves through their

dancing. One dancer in particular talked about how this dance was one of her

favorites. Could it be that this dance allowed her to connect her mind, body and

soul and express her true self?

Individuals with Down syndrome often experience lower levels of physical

activity and social participation. Although this is the case, they still have the same

needs for increased movement and social interaction. A recent study examined

whether or not dance and music could be used as avenue means to help

integrate individuals with intellectual disabilities into society. The results showed

both dance and music as a positive medium to do so (Sooful, et al., 2010). The

results of this study show similar results. The adapted dance program used both

dancing and music to not only increase physical activity for individuals with Down

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syndrome, but also to help increase social participation. Several family members

discussed how they enjoyed seeing the interaction with other dancers and the

volunteers. Furthermore, a few dancers discussed how they met new friends

during the dance program.

A recent case study investigated a mother’s perspective of a child with

Down syndrome who was enrolled in a community-based performing arts

program. The program included dance, singing, and acting. Both before and after

the program the mother completed a survey to evaluate her child’s physical,

emotional, social, and school functioning. The results showed all categories

expect emotional functioning to increase (Becker & Dusing, 2010). The results of

this study show that family members observed similar changes in their children.

Family member observations in the present study suggested dancers may have

increased their physical and social functioning. Family members not only enjoyed

seeing loved ones develop new relationships, they also recognized an emerging

ownership of skills, and were able to identify a connection of mind-body-soul.

The overall pattern that emerged from both dancer and family member

interpretations was adapted dance: connecting mind, body and soul. The mind-

body connection was noted by several family members in that they observed

their children having to use their mind to memorize and recall dance steps. The

body connection was noted by several dancers discussing how dancing made

them feel. Dancers were able to move their body to the music while using their

mind. Further, one of the dancers was able to express how dancing allowed her

to connect with her soul and created an environment for her to be herself. This in

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particular highlights the whole connection of mind-body-soul. The mind-body-soul

connection that dancing provides has been discussed a few previous articles.

One of the articles focused on how dancing increases brain activity (Alpert,

2011). The second article notes the connection with soul/spirit that dancing can

provide (LaPointe-Crump, 2006). The adapted dance program in the current

study did just this. It provided an environment that allowed dancers to connect

their mind, body and soul. This would then allow dancers to express what

Heidegger would call the true authentic self (Heidegger, 1962; Mansbach, 1991).

The third article discusses how dance is often used as a means to connect with

the spirit during prayer for religious leaders (Bessette, 1999). Iris Stewart, a

dance teacher who focuses on the mind-body-spirit connection of dance, stated

the followed about dance (Dance Quotes: Dance & Spirituality).

“Dance is the essence of mystery. Through dance we experience a dimension that the

linear mind is not structured to perceive. It may have been dance that enabled us to first conceive of existences beyond our immediate

physical experience, thereby creating the concept of spirituality, of ‘God’.”

-Iris Stewart The fourth article recognizes how dance and witnessing dance provides a

connection with mind, body and spirit (Mason, 2009). The article also discusses

the term authentic movement from a dance therapy perspective (Pallaro, 1999).

This notion of dance providing an experience of authentic movement coincides

with Heidegger’s notion of the authentic self (Heidegger, 1962; Mansbach, 1991).

The author states “I realized the power of this movement practice to transport me

beyond the physical, to a more visceral experience and re-integration of my

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mind/body/spirit, where I was able to engage in an inner dialogue with the

subconscious” (pp. 26-27). Interpretation of Rebecca’s statement during her

interview after the adapted dance program provided a very similar meaning.

“I had so much fun…and I love it…I love to dance…and I love spot light on me…feel like

amazing, happy…it was fun…I feel like soul in me…it’s just me…I can feel like grace or

something…and pretty…and be myself to the music.”, Rebecca (20)

Although individuals with Down syndrome may not have the cognitive

ability when compared to individuals without Down syndrome, they are still able

to connect with their mind, body and soul through the authentic movement of

dance.

Although very little literature exists on adapted dance for individuals with

disabilities, several dance studios and camps exist throughout the United States.

For example, Camp Thunderbird is a physical activity and arts summer camp

located in Dallas, Texas (Keglon, 2011). The program is an inclusive program

that included campers with Autism Spectrum Disorder as well as other cognitive

disabilities. The camp provided all sorts of physical activities, but also focused

highly on creative movement, dance and music. It is important to note that

programs such as this do exist. However, further research is needed to better

evaluate how programs may influence individuals with disabilities and their

families.

According to Heidegger, lived experiences about a specific phenomenon

cannot be explored unless it is within its authentic context; and the past, present

and future has an influence on every experience. However, based on the

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researcher’s interviews with the dance participants, it is noticeable that lower

functioning adolescents and young adults with Down syndrome live almost

completely in the present; the past is quickly forgotten, and they are incapable of

thinking about the future. For example, one young man could remember almost

nothing about the dance classes and program only 2 weeks after the program

when he was interviewed. This was not true for a higher functioning young

woman, who could remember the past and could contemplate the future (i.e.

desire to participate in future dance opportunities). The past-present-future

capabilities of the rest of the interviewees fell on a continuum in between these

two participants. This awareness of living in the present has implications for the

researcher and others in conducting future studies. They will likely optimize the

quality of data by interviewing participants within a few days of the occurrence of

interest in the location where it occurred.

That being said, one can look through the interviews with dancers and

argue that although the conversations were simple, their meaning was rich in

demonstrating the self-knowledge of most participants. In the following

conversation with Rebecca, age 20, self-understanding is evident

Researcher: What does it mean to be able to dance? What does that mean to you? Rebecca: Meaning is it’s just me. And, dance I can feel like grace or something. Researcher: Grace? Rebecca: Yeah. And, pretty. And, be myself to the music.

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The purity and innocence of Rebecca’s response is a great expression of

authenticity. Similarly, participant Andrew demonstrates self-awareness and

authenticity when he reveals why he enjoys dancing.

Andrew: It was great dancing around. Researcher: It was great dancing around? Andrew: And, I was by Haley to dance. Researcher: You were by Haley to dance? Andrew: Yes. Researcher: Who is Haley? Andrew: My girlfriend.

Even though the conversations may appear to be simple, the researcher’s

use of reflective questioning allowed dancers the Freedom to express authentic

answers. They were not encumbered by the pressure to produce an expected or

pleasing answer, which might have been inauthentic, but were empowered to

relate their story within their own comfort zone.

Significance of Findings

This research is instrumental in advocating for opportunities for individuals

with Down syndrome to experience dance as a social, physical and intellectual

activity that results in learning and increasing social interactions. The research

findings from this study should support future initiatives for dance programs that

may influence a population that has limited access to physical activity and dance.

The study’s teaching strategies, dance activities, class procedures and

sequences, and feedback techniques can be used by other professionals who

teach individuals with intellectual disabilities. The results offer new insights into

successful strategies that will encourage other dance educators and physical

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activity instructors to initiate programs in schools and communities where

programs do not currently exist. The study clearly addressed the needs for this

population to experience dance as a meaningful way of learning, interacting

socially, and expanding both physical and cognitive abilities.

Evaluation of Quality Criteria

In qualitative research it is important to evaluate the quality of findings. For

interpretive phenomenology there are four criteria that can be used to evaluate a

study – trustworthiness, consistency, neutrality, and applicability. In this study

trustworthiness was accomplished by only interviewing the dancers and family

members. Trustworthiness was also attained by going into the interviews

attempting to be as unbiased as possible with an open mind. Consistency was

achieved by allowing dancers and family members to share their unique stories

during interviews. Consistency was also found in the interpretation of narratives

by using a team of researchers (i.e. the Hermeneutic Circle). Using the

Hermeneutic Circle also helped achieve neutrality, along with the researcher

recognizing her biases. The researcher has a rich background in dance, so it was

imperative that she attempted to have zero preconceived notions and remain as

neutral as possible during all interviews.

Limitations of the Study

Although the researcher aimed to achieve validity in the present study,

there will always be limitations in any study. The first limitation of this study is that

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the results may not be applicable to all situations or all individuals with

Down syndrome. Phenomenology seeks to identify the lived experience

within specific contexts because the context of each experience highly

influences meaning. The second limitation was a methodological

limitation. Dancers were interviewed back to back with little time for the

researcher to analyze transcripts. However, this could also be seen as a

strength of the study because dancers had a fresh memory of the adapted

dance program. If the interviews were conducted several weeks or months

after the adapted dance program, dancers might not have been able to

accurately reflect on their experience. The third limitation was the location

of dancer interviews. The dancers were interviewed in a room adjacent to

the dance studio that was unfamiliar to the dancers. This may have

deterred dancers from being able to properly recall their experience while

dancing in the dance program. If dancers had been interviewed in the

dance classroom that was familiar to dancers it may have helped increase

memory recall.

As stated in chapter one, all individuals with Down syndrome have

some degree of cognitive impairment. One might speculate that

Heidegger’s third concept of personhood, a person as self-interpreting,

may not apply to individuals who have a cognitive impairment. This was

observed in the current study in that some dancers were able to recall

experiences and contemplate the future; whereas, the more cognitively

impaired the adolescent/young adult was the more s/he lived only in the

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present. For example, some the dancers were hardly able to remember the

recital after only 2 to 3 weeks. Therefore, the interviews should have been

completed quickly and in as close to the environment of the dance classes and

recital as possible. It is also possible that dancers were not able to understand

questions or critically reflect on their experience. This study used an unstructured

interview procedure, allowing modification of language as needed to facilitate the

dancers’ understanding and ability to respond to the questions. This allowed

dancers to express themselves in their own words and in their own ways

regardless of their cognitive skills. Furthermore, the researchers had prior

experience with individuals who may have limited cognitive abilities and have

successfully communicated with those individuals.

Another limitation of the study was that only family members were

interviewed. In some cases, aids or assistants brought a dancer to the dance

classes. In this situation, the family member interviewed may have had limited

observation of their loved one throughout the dance program. To better capture

the experience, future studies should consider including non-family member

caregivers in interviews.

The last limitation is investigator bias. As stated above, the researcher has

a background in dance and may have had preconceived notions about the

experience of dance among individuals with Down syndrome. However, part of

the phenomenological method is to make the researchers’ positions known to

themselves and each other so that preconceptions and biases can be addressed

prior to and throughout the data gathering and analysis processes. Additionally,

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the researcher was present at all of the dance sessions. Although she did

not lead any of the sessions, the dancers and family members would have

recognized who she was during the interviews. However, this could also

be seen as a strength; recognizing the researcher may have helped

dancers feel more comfortable during the interviews and possibly facilitate

connections with the interviewer, which might have helped the dancers to

better recall their experience in the dance program. Additionally, being at

the dance sessions might have given the researcher ideas for questions

that may not have otherwise been asked.

Suggestions for Further Research

As shown in chapter four, the dance program revealed several positive

experiences for both dancers and family members. But perhaps one of the most

significant interpretations came from a family member’s observation. One parent

in particular stated the following during one of the focus groups.

“I think we all know you are going to be writing this up for your academic journals or whatever, but I would

encourage you all to write something…because, you know, it would be nice if 100 communities started this next year and then 500 and then 1000 and…if people

don’t know about it, it’s something; I don’t know, maybe within your field, there might be many other

places they would say, “Hey, we can do that, too.” It’s a wonderful program.” Bob, dad of Amy (22)

Researchers should take note of this comment because several parents

also discussed how hard it is to find physical activity programming for adults with

Down syndrome. The use of a community-based adapted dance program such

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as the one in this study not only provides physical activity, but also an opportunity

for individuals to interact with peers. Similarly, a few additional parents noted the

following.

“I totally enjoyed it because it’s hard, at her age, for her to find somewhere that she does fit in.”

Evelyn, mom of Morgan (20)

“…especially when they get older, there’s not a whole lot for them to do.”

Natalie, mom of Leslie (13)

“The older they get, the harder it is to find for Down syndrome’s to do.”

Susie, mom of Rebecca (20) It is evident that parents of young adults with Down syndrome often

struggle to find social opportunities for their children. The use of adapted dance

proved to be an excellent means of providing this much needed community

programming.

Further research is needed on similar programs being held in various

locations throughout the United States in order to evaluate the applicability of the

current study’s findings. Future studies should also include dancers with

cognitive impairments other than Down syndrome. For example, one might

speculate that a dance program for individuals with Autism Spectrum Disorder

may reveal similar findings.

Future studies should also investigate the use of inclusive programming

versus non-inclusive programming. Several parents noted the desire to have

their child interact with others with Down syndrome. This desire should be further

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evaluated and compared to the traditional adapted physical activity

recommendations of inclusive programming.

Future research should also investigate coordination and rhythmic acuity

before and after the dance program using a quantitative measure. Several

parents noted this observation, but it will be important to evaluate if the

observation is in fact statistically significant.

It is important to note that the researcher decided to continue the adapted

dance program. One year following the first adapted dance program, the

researcher directed the second annual adapted dance program – Live Laugh

Dance Camp. All but two of the past dancers enrolled in the program for second

year. Results of the second year of the Live Laugh Dance Camp are forthcoming.

The high adherence rate for the dance program should be noted and

evaluated in future studies. Was the adherence high due to dancers having fun

during the adapted physical activity of dance? Guidelines for adapted physical

activity state that the activity should be fun (Stanish & Frey, 2008). Several of the

dance participants noted during interviews how they had fun and how dancing

made them feel happy. This should be further evalauted in future studies to

determine if a connection exists between dance as a fun physical activity and

adherence to adapted programming.

Summary and Conclusions

This is the first study to explore the lived experience of an adapted

dance program for individuals with Down syndrome. Therefore, it is

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pioneering and forward thinking in determining the experience of an adapted

dance program for individuals with Down syndrome and their family members.

The results of this study showed an adapted dance program to be a very fun

experience for dancers as well as very rewarding for family members. Future

research should focus on a wider age range of dancers and hold adapted dance

programs in different locations throughout the United States. Additionally,

quantitative research should be used to evaluate whether coordination and

rhythmic acuity actually do increase. Furthermore, individuals with other cognitive

disabilities, such as Autism Spectrum Disorder, should be included in adapted

dance programs to determine if the findings of this research study are applicable

to other populations.

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Appendix A: Live Laugh Dance Logo & Picture of Dancers & Volunteers

Photography by Rebecca Ahaus

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Appendix B: Recruitment Flyer

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Appendix C: Dance Class Schedule & Class Rules

Dance Class Schedule

Review Rules

6:30-6:45 Warm-Up

6:45-7:00 Skill Building (e.g. across the floor)

Break

7:05-7:30 Dance Choreography

Break

7:35-7:50 Dance Activity Stations or Review Choreography

7:50-8:00 Cool-down & Reflection

Class Rules*

Do your best

Respect others

Be safe

Follow directions

Share, be kind and help others

*Adopted from: Dr. Theresa Purcell Cone http://users.rowan.edu/~conet/

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Appendix D: Adapted Lesson Plans

Day 1 (Hip Hop) Song Activity Notes

Dance Ice Breaker

Name with a Dance move

Warm up Move it Seat-to-feet Finding rhythm

Shakeable you

Follow song instructions

Across the Floor Get this party started

Spiral dance along lines on the floor

Across the Floor Krunk & Krazy

Lateral movements

side steps, walking on toes, walking squats, heal taps, gallops, skips, side shuffles

Urban grove

Repeat on multi directional lines

One groups and/or split in smaller groups

Break Dancin’ in the Streets

Choreography Baby Teach verses & chorus of dance moves

Break Please Don’t Stop the Music

Stations I Like It Shoe Dance Tempo training

One Time Dancing Dice Group dance

Somebody to Love

Dancing Shapes

Group makes shapes with bodies (as group or individually)

Cool Down/Stretch

A Whole New World

Ribbon Dance Interpretive

Wop Bop Show new dance move learned

In small groups

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Day 2 (Hip Hop) Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Can you do it?

Follow song instructions

Balloon/hat stretch

Balloon/hat stretch

Across the Floor Krunk $ Krazy

Lateral/multi directional movements Review

side steps, walking on toes, walking squats, heal taps, gallops, skips, side shuffles

Route 66 Partner dancing Two step and swing

Break Dancin’ in the Streets

Choreography Baby Review

Teach beginning part and dance tunnel

Ribbon dance

Review

Break Please Don’t Stop the Music

Stations Dynamite Cloud Dance Interpretive

Apologize Spaghetti Bowl Stiff and Loose movement/need hula hoops

Stranger Stop and GO Holding positions/free dance

Cool Down/Stretch

We are all in this together

Hand Dance

Talk about favorite activity

Small groups and or large group

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Day 3 (Fiesta) Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Shakeable You

Follow song instructions

Use maracas

Zumbandando Follow the leader with Maracas

Across the Floor Que to Mueve Santa Que

Lateral/positional

Merengue (march, 2 step) Salsa (Front/back, side to side) Cumbia (Front/back, sleep leg, 2 step) Reggaeton (stomp, knee lift)

Break Dancin’ in the Streets

Choreography Fuego Teach steps

Break Please Don’t Stop the Music

Stations Zumbalicious Percussion Dancing

Different moves for different beats (need sticks & maracas)

Baila Pa Emociona

Low, Medium, High

Practice of different levels of dancing in space

Shake Remix Little Sally Walker

Try to incorporate new dance moves

Cool Down/Stretch

Zumba Lluvia Interpretive Dance

Use any props (ribbons, sticks, shakers, etc.) to match music

Dance Tunnel w/ partner

91

Day 4 (Fiesta) Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Can you do it?

Follow song instructions

Move your body

Follow song instructions

Across the Floor Que tu Mueve Santa Que

Lateral/multi directional movements Review

Merengue (march, 2 step) Salsa (Front/back, side to side) Cumbia (Front/back, sleep leg, 2 step) Reggaeton (stomp, knee lift)

Hips Don’t Lie

Partner dancing

Salsa

Break Dancin’ in the Streets

Choreography Fuego Review

Baby Review

Break Please Don’t Stop the Music

Stations Shake Remix

Body Beats Finding beats with different body parts

We No Speak Americano

Bubble Dance One person blows bubbles but when they pop-must freeze

Shake your Bon Bon

Partner Mirror Pretend you are a mirror with your partner (dance/exercises/stretches)

Cool Down/Stretch

We are all in this together

Hand Dance

I am… Color in face on paper to describe feeling-tape to mirror

92

Day 5 (Country) Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Cha Cha Slide

Follow song instructions

Good Time Scarf Stretch

Across the Floor Cowboy Casanova Watermelon Crawl Boot Scootin’ Boogie

Lateral/multi directional movements Review

Heel taps, toe taps, grape vines, side steps, basic turns, hip shakes walking on toes, walking squats, gallops, skips, side shuffles

Break Dancin’ in the Streets

Choreography You Belong With Me

Teach steps

Baby/Fuego Review

Break Please Don’t Stop the Music

Stations Copperhead Road

Spiral Dance Need bandanas

Sweet Home Alabama

Dancin’ Dice Group dance

Cotton Eyed Joe

Verb Words Personal interpretation of verb words

Cool Down/Stretch

Tiring Morning Dance out waking up and walking down stairs

Dance Tunnel Big Group

93

Day 6 (Country) Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Cupid Shuffle

Follow song instructions

Our Song

Across the Floor Little White Church Stuck like Glue Save a horse ride a cowboy Sinwagon

Lateral/multi directional movements Review

Heel taps, toe taps, grape vines, side steps, basic turns, hip shakes walking on toes, walking squats, gallops, skips, side shuffles

Cotton Eyed Joe

Partner dancing Basic Square Dance

Break Dancin’ in the Streets

Choreography God Bless Texas

Teach steps

Break Please Don’t Stop the Music

Stations Life is a highway

Spiral dance One big group

Review Baby

Fuego

You Belong With Me

Cool Down/Stretch

We are all in this together

Hand Dance

Favorite Color in face on paper to describe feeling-tape to mirror

94

Day 7 (Jungle) Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Animal Song

Act like the animal

Festival Music

Animal Stretches

Across the Floor Love Child Arabian Myth Latin Ritual

Lateral/multi directional movements Review

Begin reviewing previous steps, continue with turns and spotting

Break Dancin’ in the Streets

Choreography Waka Waka

Teach steps

Break Please Don’t Stop the Music

Stations I Want Some More

Parachute Circles

Practice moving in circles (rotation and forward/back)

Sweat Lion Dance Dance out waking lion hunting for food, encourage facial expressions

Oye Emoticon Dance

Show emoticon, respond with dance/facial expression

Cool Down/Stretch

Multiple Songs

Music Change Music starts faster and changes to slower and slower - Free dance/interpretive

New York House

Show your favorite dance move

One big group

95

Day 8 (Jungle) Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Festival Dance

Run through the Jungle

Love Child

Stick stretch-Yoga poses

Across the Floor Pam Pam Prrrum Sweat

Lateral/multi directional movements Review

Continue reviewing previous steps

Break Dancin’ in the Streets

Choreography Waka Waka

Review

Break Please Don’t Stop the Music

Review Baby

Fuego

You Belong With Me

God Bless Texas

Waka Waka

Cool Down/Stretch

A Whole New World

Circle Dance Use scarfs/like spiral dance but in circle

Talk about what dance move you like best

In small groups

96

Day 9 (Hawaiian)

Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Can you do it?

Follow song instructions

Feelin’ Good

Mission Impossible

Try to keep object/lei on head during activities/stretches

Across the Floor Jamaican Cumbia JaiHo Hella Decale

Lateral/multi directional movements Review

Review movements / add arm movements

Break Dancin’ in the Streets

Choreography Princess Pupuli

Teach steps

Break Please Don’t Stop the Music

Stations The Art of Translation

Story Telling Tell a story, dance out storyline

Ain’t No Mountain High Enough

Opposite Walk/dance around - leader says opposite words (soft/hard,high/low) dancers act out one or the other

Happy Together

Partner Mirror Pretend you are a mirror with your partner (dance/exercises/stretches)

Cool Down/Stretch

We are all in this

together

Hand Dance

I am… Color in face on paper to describe feeling-tape to mirror

97

Day 10 (Hawaiian)

Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Shakeable you

Follow song instructions

Sport Song

Act out the sport

Across the Floor The Warlocks Fife Catch the Moments as they Fly Tiny Bubbles

Lateral/multi directional movements Review

Review movements, combinations, ripple effects

Break Dancin’ in the Streets

Choreography Princess Pupuli

Review

Break Please Don’t Stop the Music

Review Baby

Fuego

You Belong With Me

God Bless Texas

Waka Waka

Cool Down/Stretch

Dancing with other senses

Lay on ground and close eyes, participants do activities/find body parts with eyes closed

I am… Color in face on paper to describe feeling-tape to mirror

98

Day 11 (Rehearsal)

Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Can you do it?

Follow song instructions

Review all dances

Spiral Dance

Determine additional activities based on needs

Baby

Fuego

You Belong With Me

God Bless Texas

Waka Waka

Princess Pupuli

Interpretive Dance

Cool Down/Stretch

Little Sally Walker

Show your favorite dance move

99

Day 12 (Recital) Song Activity Notes

Warm up Move it Seat-to-feet Finding rhythm

Performance Spiral Dance

Baby

Fuego

You Belong With Me

God Bless Texas

Waka Waka

Princess Pupuli

Interpretive Dance

Present Certificates

Cool Down/Stretch

We are all in this

together

Hand Dance Ask Parents to do to it with the dancers

Group Picture

100

Appendix E: Video Links

Down Syndrome Indiana: Live Laugh Dance Program 2012

http://www.youtube.com/watch?v=TQFTN27H9Lc&list=UUW81q0ZlG5KS3Vvn5

H2RUnw&index=7&feature=plcp

Adapted Dance Week 1: Hip Hop

http://www.youtube.com/watch?v=ra_JXbRF8ac&feature=plcp

Adapted Dance Week 2: Latin Cumbia

http://www.youtube.com/watch?v=TqT2jcJr-OY&feature=plcp

Adapted Dance Week 3: Country Line Dance 1

http://www.youtube.com/watch?v=D85UcLMBuSM&feature=plcp

Adapted Dance Week 3: Country Line Dance 2

http://www.youtube.com/watch?v=tf4XAo8SOH4&feature=plcp

Adapted Dance Week 4: African Cultural

http://www.youtube.com/watch?v=ej3B6poQFT8&list=UUC9iwzBAkbPuybC9O3

QA4VA&index=3&feature=plcp

Adapted Dance Week 5: Polynesian

http://www.youtube.com/watch?v=P39TvrQkJMM&feature=plcp

101

Appendix F: Personal Folder Information

102

Warm-Ups

Skill Building Choreography Stations/

Review Cool-Down Reflection

Hip Hop 1

Hip Hop 2

Fiesta 1

Fiesta 2

Country 1

Country 2

Jungle 1

Jungle 2

Hawaiian 1

Hawaiian 2

103

Appendix G: Dance Calendar

104

Appendix H: Dance Recital Announcement

105

Appendix I: Dancer Certificate of Completion

106

References

Alpert, P. T. (2011). The Health Benefits of Dance. Home Health Care

Management & Practice, 23(2), 155-157.

Angelopoulou, N., Tsimaras, V., Christoulas, K., & Mandroukas, K. (1999).

Measurement of range of motion in individuals with mental retardation and

with or without Down syndrome. Perceptual & Motor Skills, 89(2), 550-

556.

Annells, M. (2006). Triangulation of qualitative approaches: Hermeneutical

phenomenology and grounded theory. Journal of Advanced Nursing,

56(1), 55-61.

Balic, M. G., Mateos, E. C., Blasco, C. G., & Fernhall, B. (2000). Physical fitness

levels of physically active and sedentary adults with Down syndrome.

Adapted Physical Activity Quarterly, 17(3), 310-321.

Barr, M., & Shields, N. (2011). Identifying the barriers and facilitators to

participation in physical activity for children with Down syndrome. Journal

of Intellectual Disability Research, 55(11), 1020-1033.

Becker, E., & Dusing, S. (2010). Participation is possible: a case report of

integration into a community performing arts program. Physiotherapy

Theory & Practice, 26(4), 275-280.

Benner, P. (1985). Quality of life: a phenomenological perspective on

explanation, prediction, and understanding in nursing science. Advances

in Nursing Science, 8(1), 1-14.

107

Bennett, F., Eisenman, P., French, R., Henderson, H., & Schultz, B. (1989). The

effect of a token economy on the exercise behavior of individuals with

Down syndrome. Adapted Physical Activity Quarterly, 6(3), 230-246.

Bennett, J. P., & Riemer, P. C. (2006). Rhythmic Activities and Dance (2 ed.).

Champaign, IL: Human Kinetics.

Bernstein, C. (2012). Adaptive Class Dances With Individual Flair Retrieved July

20, 2012, from http://tewksbury.patch.com/articles/adaptive-class-dances-

with-individual-flair

Bessette, O. B. (1999). Dance as prayer: Moving the body to stir the soul.

Catholic Education: A Journal of Inquiry & Practice, 3(2), 226-236.

Bhattacharya, M., & Sidebotham, P. (2000). Parental and professional

perceptions of the levels of disability in children with Down's syndrome...

including commentary by Vandyke D. Ambulatory Child Health, 6(3), 153-

163.

Block, B., & Kissell, J. L. (2001). The Dance: Essence of Embodiment.

Theoretical Medicine and Bioethics, 22(1), 5-15.

Brown, M., & Gordon, W. A. (1987). Impact of impairment on activity patterns of

children. Archives of Physical Medicine & Rehabilitation, 68(12), 828-832.

Cahill, B. M., & Glidden, L. M. (1996). Influence of child diagnosis on family and

parental functioning: Down syndrome versus other disabilities. American

Journal on Mental Retardation, 101(2), 149-160.

108

Carmeli, E., Ariav, C., Bar-Yossef, T., Levy, R., & Imam, B. (2012). Movement

Skills of Younger versus Older Adults with and without Down Syndrome.

Research in Developmental Disabilities: A Multidisciplinary Journal, 33(1),

165-171.

Coe, D. A., Matson, J. L., Russell, D. W., Slifer, K. J., Capone, G. T., Baglio, C.,

& Stallings, S. (1999). Behavior Problems of Children with Down

Syndrome and Life Events. Journal of Autism and Developmental

Disorders, 29(2), 149-156.

Cohen, S. O., & Walco, G. A. (1999). Dance/Movement Therapy for Children and

Adolescents with Cancer. Cancer Practice, 7(1), 34-42.

Cone, T. P., & Cone, S. L. (2005). Teaching Children Dance. 2nd ed.

Champaign, Ill.; United States: Human Kinetics.

Cone, T. P., & Cone, S. L. (2011). Strategies for Teaching Dancers of All

Abilities. Journal of Physical Education, Recreation and Dance, 82(2), 24-

31.

Connor, M. (2000). Recreational folk dance: A multicultural exercise component

in healthy ageing. Australian Occupational Therapy Journal, 47(2), 69-76.

Crabtree, K. E. (2011). Adapted Dance: Meeting the Needs of Our Students:

Introduction. Journal of Physical Education, Recreation and Dance, 82(2),

15-31.

Crist, J., & Tanner, C. (2003). Interpretation/analysis methods in hermeneutic

interpretive phenomenology. Nursing Research, 52(3), 202.

109

Cuckle, P., & Wilson, J. (2002). Social relationships and friendships among

young people with Down’s syndrome in secondary schools. British Journal

of Special Education, 29(2), 66.

Cunningham, C., & Glenn, S. (2004). Self-Awareness in Young Adults with down

Syndrome: I. Awareness of Down Syndrome and Disability. International

Journal of Disability Development and Education, 51(4), 335-361.

Dance Quotes: Dance & Spirituality. Retrieved April 17, 2012, from

http://www.dance-quotes.net/spirituality-dance-quotes.html

Dance Quotes: Movement & Expression. Retrieved April 17, 2012, from

http://www.dance-quotes.net/movement-&-expression-quotes.html

Dancing Quotes. Retrieved April 17, 2012, from

http://www.finestquotes.com/select_quote-category-Dancing-page-0.htm

Davis, A. J. (2000). Dance and the lived experience: a phenomenological

account of a performer's journey. Eugene, OR; United States: Microform

Publications, University of Oregon.

Davis, R. W., Kotecki, J. E., Harvey, M. W., & Oliver, A. (2007). Responsibilities

and Training Needs of Paraeducators in Physical Education. Adapted

Physical Activity Quarterly, 24(1), 70-83.

Diekelmann, N., & Ironside, P.M. (1998). Hermeneutics. In J. Fitzpatrick (Ed.),

Encyclopedia of Nursing Research (pp. 243-245). New York: Springer

Publications.

110

Drum, C. E., Peterson, J. J., Culley, C., Krahn, G., Heller, T., Kimpton, T.,

McCubbin, J., Rimmner, J., Seekins, T., Suzuki, R., & White, G. W.

(2009). Guidelines and Criteria for the Implementation of Community-

Based Health Promotion Programs for Individuals With Disabilities.

American Journal of Health Promotion, 24(2), 93-101.

Dupont, B. B., & Schulmann, D. (1987). Dance Therapy with Physical Therapy

for Children with Down Syndrome.

English, L. M. (1999). A close look at intimacy. Human Development, 20(2), 5.

Eria Ping-ying, L. (2006). Successful experience of people with Down syndrome.

Journal of Intellectual Disabilities, 10(2), 143-154.

Fernhall, B., Pitetti, K. H., Rimmer, J. H., McCubbin, J. A., Rintala, P., Millar, A.

L., Kittredge, J., & Burkett, L. N. (1996). Cardiorespiratory capacity of

individuals with mental retardation including Down syndrome. Medicine &

Science in Sports & Exercise, 28(3), 366-371.

Fraser, F. C., & Sadovnick, A. D. (1976). Correlation of IQ in subjects with Down

syndrome and their parents and sibs. Journal of Mental Deficiency

Research, 20(3), 179-182.

Gardner, S. M., Komesaroff, P., & Fensham, R. (2008). Dancing beyond

exercise: young people's experiences in dance classes. Journal of Youth

Studies, 11(6), 701-709.

Glenn, S., & Cunningham, C. (2004). Self-Awareness in Young Adults with Down

Syndrome: II. Self-Understanding. International Journal of Disability

Development and Education, 51(4), 363-381.

111

Goodwin, D. L., Krohn, J., & Kuhnle, A. (2004). Beyond the Wheelchair: The

Experience of Dance. Adapted Physical Activity Quarterly, 21(3), 229-247.

Heah, T., Case, T., McGuire, B., & Law, M. (2007). Successful participation: the

lived experience among children with disabilities. Canadian Journal of

Occupational Therapy, 74(1), 38(10).

Heidegger, M. (1962). Being and time. New York, NY; United States: Harper &

Row.

Heller, T., Hsieh, K., & Rimmer, J. (2002). Barriers and supports for exercise

participation among adults with Down syndrome. Journal of Gerontological

Social Work, 38(1/2), 161-178.

Hodapp, R. M. (2007). Families of persons with Down syndrome: New

perspectives, findings, and research and service needs. Mental

Retardation And Developmental Disabilities Research Reviews, 13(3),

279-287.

Hurley, A. D., & Sovner, R. (1982). Down's syndrome: A psychiatric perspective.

Psychiatric Aspects of Mental Retardation Newsletter, 1(9), 33-36.

Jobling, A., Moni, K. B., & Nolan, A. (2000). Understanding friendship: Young

adults with Down syndrome exploring relationships. Journal of Intellectual

& Developmental Disability, 25(3), 235-245.

Jobling, A., Virji-Babul, N., & Nichols, D. (2006). Children with Down Syndrome:

Discovering the Joy of Movement. Journal of Physical Education,

Recreation & Dance, 77(6), 34-38.

112

Keglon, J. (2011). Camp Thunderbird: Taking Flight with Dance and Physical

Education for Special Populations. Journal of Physical Education,

Recreation and Dance, 82(2), 32-34.

Keogh, J. W. L., Kilding, A., Pidgeon, P., Ashley, L., & Gillis, D. (2009). Physical

Benefits of Dancing for Healthy Older Adults: A Review. Journal of Aging

& Physical Activity, 17(4), 479-500.

King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M. K., & Young, N. L.

(2003). A conceptual model of the factors affecting the recreation and

leisure participation of children with disabilities. Physical & Occupational

Therapy in Pediatrics, 23(1), 63-90.

Klein, T., Gilman, E., & Zigler, E. (1993). Special Olympics: An Evaluation by

Professionals and Parents. Les jeux olympiques spéciaux., 31(1), 15-23.

Laban, R. (1963). Modern Educational Dance (2nd ed., revised by L. Ullmaan).

New York: Praeger.

LaPointe-Crump, J. (2006). Dance Movement and Spirit. Journal of Physical

Education, Recreation and Dance, 77(5), 3-12.

Lavay, B., French, R., & Henderson, H. (2007). A Practical Plan for Managing the

Behavior of Students with Disabilities in General Physical Education.

Journal of Physical Education, Recreation and Dance, 78(2), 42-48.

Lavay, B., Henderson, H., French, R., & Guthrie, S. (2012). Behavior

management instructional practices and content of college/university

physical education teacher education (PETE) programs. Physical

Education & Sport Pedagogy, 17(2), 195-210.

113

Leonard, V. W. (1989). A Heideggerian phenomenologic perspective on the

concept of the person. Advances in Nursing Science, 11(4), 40-55.

Li, E. P.-y., Liu, Y.-m., Lok, N. C.-y., & Lee, V. W.-k. (2006). Successful

experience of people with Down syndrome. Journal of Intellectual

Disabilities, 10(2), 143-154.

Lopez, K., & Willis, D. (2004). Descriptive versus interpretive phenomenology:

their contributions to nursing knowledge. Qualitative Health Research,

14(5), 726.

Maatta, T., Maatta, J., Tervo-Maatta, T., Taanila, A., Kaski, M., & Iivanainen, M.

(2011). Healthcare and Guidelines: A Population-Based Survey of

Recorded Medical Problems and Health Surveillance for People with

Down syndrome. Journal of Intellectual & Developmental Disability, 36(2),

118-126.

Mahy, J., Shields, N., Taylor, N. F., & Dodd, K. J. (2010). Identifying facilitators

and barriers to physical activity for adults with Down syndrome. Journal of

Intellectual Disability Research, 54(Part 9), 795-805.

Mansbach, A. (1991). Heidegger on the Self, Authenticity and Inauthenticity. The

Jerusalem Philosophical Quarterly, 65-91.

Mason, J. (2009). Authentic movement: A salve for imposter phenomenon.

Review of Human Factor Studies, 15(1), 17-32.

Maxwell, V., & Barr, O. (2003). With the benefit of hindsight: a mother's

reflections on raising a child with Down Syndrome. Journal of Learning

Disabilities (14690047), 7(1), 51-64.

114

McHugh, E. (2007). Inclusive Creative Movement and Dance. Adapted Physical

Activity Quarterly, 24(2), 197-198.

Menear, K. S. (2007). Parents' Perceptions of Health and Physical Activity Needs

of Children with Down Syndrome. Down Syndrome Research and

Practice, 12(1), 60-68.

Murphy, N. A., & Carbone, P. S. (2008). Promoting the participation of children

with disabilities in sports, recreation, and physical activities. Pediatrics,

121(5), 1057-1061.

Nunes, M. D. R., & Dupas, G. (2011). Independence of children with Down

syndrome: the experiences of families. Revista Latino-Americana de

Enfermagem, 19(4), 985-993.

Oates, A., Bebbington, A., Bourke, J., Girdler, S., & Leonard, H. (2011). Leisure

participation for school-aged children with Down syndrome. Disability &

Rehabilitation, 33(19/20), 1880-1889.

Pallaro, P. (1999). Authentic Movement. I. London: Jessica Kingsley London,

Great Britain.

Pitetti, K. H., Rimmer, J. H., & Fernhall, B. (1993). Physical Fitness and Adults

with Mental Retardation: An Overview of Current Research and Future

Directions. Sports Medicine, 16(1), 23-56.

Pueschel, S. M., & Scola, F. H. (1987). Atlantoaxial Instability in Individuals With

Down Syndrome: Epidemiologic, Radiographic, and Clinical Studies.

Pediatrics, 80(4), 555-560.

115

Quin, E., Frazer, L., & Redding, E. (2007). The health benefits of creative dance:

improving children's physical and psychological wellbeing. Education &

Health, 25(2), 31-33.

Rimmer, J. A., & Rowland, J. L. (2008). Physical activity for youth with

disabilities: A critical need in an underserved population. Developmental

Neurorehabilitation, 11(2), 141-148.

Rimmer, J. H., Chen, M.-D., McCubbin, J. A., Drum, C., & Peterson, J. (2010).

Exercise Intervention Research on Persons with Disabilities: What We

Know and Where We Need to Go. American Journal of Physical Medicine

& Rehabilitation, 89(3), 249-263.

Rodrigues, & Dupas, G. (2011). Independence of children with Down syndrome:

the experiences of families. Revista Latino-Americana de Enfermagem,

19(4), 985-993.

Rubin, S. S., Rimmer, J. H., Chicoine, B., Braddock, D., & McGuire, D. E. (1998).

Overweight Prevalence in Persons With Down Syndrome. Mental

Retardation, 36(3), 175-181.

Schlesinger, H. S. (2000). A Developmental Model Applied to Problems of

Deafness. Journal of Deaf Studies and Deaf Education, 5(4), 349-361.

Sherman, S. L., Allen, E. G., Bean, L. H., & Freeman, S. B. (2007). Epidemiology

of Down syndrome. Mental Retardation And Developmental Disabilities

Research Reviews, 13(3), 221-227.

116

Shields, N., Dodd, K. J., & Abblitt, C. (2009). Do Children With Down Syndrome

Perform Sufficient Physical Activity to Maintain Good Health? A Pilot

Study. Adapted Physical Activity Quarterly, 26(4), 307-320.

Shin, M., Besser, L. M., Kucik, J. E., Lu, C., Siffel, C., & Correa, A. (2009).

Prevalence of Down Syndrome Among Children and Adolescents in 10

Regions of the United States. Pediatrics, 124(6), 1565-1571.

Skotko, B. G., Levine, S. P., & Goldstein, R. (2011). Self-perceptions from people

with Down syndrome. American Journal Of Medical Genetics. Part A,

155A(10), 2360-2369.

Sloan, R. S. (2002). Living a life-sustained-by-medical-technology: Dialysis is

killing me. In D. Diekelmann (Ed.), First do no harm: Power, oppression

and violence in healthcare (Vol. 1, pp. 118-163). Madison: University of

Wisconsin Press.

Smith, A., Christianson, C., Warren, N., Lemasters, G., & Patterson, B. (2001).

The expressed characteristics of personal relationships of young adults

with Down syndrome. Journal of Genetic Counseling, 10(6), 483-483.

Sooful, A., Surujlal, J., & Dhurup, M. (2010). Dance and music as mediums for

the social integration of children with intellectual disabilities into

mainstream society. African Journal for Physical, Health Education,

Recreation & Dance, 16(4), 681-697.

Speziale, H. J. S., & Carpenter, D. R. (2007). Phenomenology as a method

Qualitative research in nursing: Advancing the humanistic imperative (4

ed., pp. 78-81). Philadelphia: Lippincott Williams & Wilkins.

117

Stanish, H. I., & Frey, G. C. (2008). Promotion of physical activity in individuals

with intellectual disability. Salud Pública de México, 50, s178-s184.

Weiss, J., Diamond, T., Demark, J., & Lovald, B. (2003). Involvement in Special

Olympics and Its Relations to Self-Concept and Actual Competency in

Participants with Developmental Disabilities. Research in Developmental

Disabilities, 24(4), 281-305.

Whitt-Glover, M. C., O'Neill, K. L., & Stettler, N. (2006). Physical activity patterns

in children with and without Down syndrome. Pediatric Rehabilitation, 9(2),

158-164.

Wilson, P. (2010). Adaptive Dance Classes and Down Syndrome Retrieved

January 4, 2011, from http://www.bellaonline.com/articles/art65787.asp

Wilson, P. E. (2002). Exercise and sports for children who have disabilities.

Physical Medicine & Rehabilitation Clinics of North America, 13(4), 907-

923.

CURRICULUM VITAE

Rachel R. Swinford EDUCATION PhD School of Health and Rehabilitation Sciences

Indiana University Dissertation: Adapted Dance – Connecting Mind, Body and Soul

MS School of Physical Education and Tourism Management Indiana University BS School of Physical Education and Tourism Management Indiana University ACADEMIC APPOINTMENTS 2007-2008 Visiting Lecturer, Department of Kinesiology IUPUI, Indianapolis, IN 2008-2012 Lecturer, Department of Kinesiology IUPUI, Indianapolis, IN 2012-Present Lecturer & Director of Elective Program, Department of

Kinesiology IUPUI, Indianapolis, IN OTHER APPOINTMENTS 2003-2005 Manager, Curves International, Indianapolis, IN 2005-2007 Graduate/Research Assistant, Department of

Kinesiology, IUPUI 2011-Present Group Fitness Instructor, Beech Grove Community

Center, Beech Grove, IN 2011-Present Dance Instructor, 8 Seconds Country Line Dancing,

Indianapolis, IN CERTIFICATIONS 2008-Present Health Fitness Specialist, American College of Sports

Medicine 2011-Present Zumba Basic 1, Zumba Fitness

PROFESSIONAL ORGANIZATIONS 2007-Present American College of Sports Medicine 2007-Present Indiana Association for Health, Physical Education,

Recreation and Dance 2008-Present American Alliance for Health, Physical Education,

Recreation and Dance 2008-Present Phi Epsilon Kappa National Fraternity HONORS AND AWARDS 2005 IUPUI Top 100 Student 2008-Present Golden Key International Honour Society 2008 IUPUI Outstanding Educator Recognition 2009-2011 IUPUI Favorite Professor Recognition 2011 Indiana University Trustees Teaching Award 2012 Indiana University Trustees Teaching Award PROFESSIONAL SERVICE 2008-2010 Dance Council Member, Indiana Association for Health,

Physical Education, Recreation and Dance 2010-Present Dance Council Vice President, Indiana Association for

Health, Physical Education, Recreation and Dance UNIVERSITY SERVICE 2010 Boot Scootin’ for Camp Brosius Getaway, IUPUI Impact

Campaign Kickoff Event 2010 Choreographed and Taught Thriller Dance, Office of

International Affairs 2010 Taught Line Dancing for an IUPUI Sorority, Alpha Sigma

Alpha Sorority 2011 Taught Line Dancing for an IUPUI Fundraiser, Be Haiti

Student Organization 2011 Get Off the Couch and Get Movin' Presentation, IUPUI

Student Health 2011 Taught Line Dancing at IUPUI’s Jagathon Dance

Marathon, IUPUI Jagathon 2012 New Year, New You – Setting Wellness Goals

Presentation, IUPUI Student Health

STUDENT SERVICE 2007-Present Academic Advisor for Student-Athletes, Department of

Physical Education 2008-Present Faculty Advisor, School of Physical Education & Tourism

Management Student Council 2008-2009 Faculty Advisor, IUPUI Hip Hop Dance Crew 2011-Present Faculty Advisor, Line Dance IUPUI COMMUNITY SERVICE 2010 Riley Dance Camp Volunteer Dance Instructor, Riley

Hospital at IU Health North 2010 & 2011 Taught Line Dancing in Physical Education Classes,

Cathedral High School 2011 Taught Dance to IPS Students enrolled in the Riley

Health Club, IU Health 2011 Dance Instructor, Stables Country Line Dancing 2011 Taught Dance to Children at The Fitness Farm, Children’s

Better Health Institute 2011 A Night of Foot Stompin’ Fun, Community Church of

Greenwood 2011 Holiday Dance Class and Karaoke Party, Down Syndrome

Indiana 2011 Fitness and Soccer Mission Trip, Kenya, Africa, The

Gathering Place Sports and Fitness 2011-Present Volunteer Group Fitness Instructor, The Gathering Place

Sports and Fitness 2012 Guest Instructor for Rhythms & Movement Course,

Marian University 2012 Taught Line Dancing in Physical Education Classes,

Warren Central High School 2012 Taught Line Dancing at La Plaza Summer Camp, St.

Gabriel Catholic Church COURSES TAUGHT HPER E100: Clogging HPER E100: Line Dancing HPER E100: Fitness Walking HPER E100: Stress Reduction/Meditation Techniques HPER E121: Weight Training and Conditioning HPER L135: First Year Seminar in Physical Education HPER P205: Structural Kinesiology HPER P212: Introduction to Exercise Science

HPER P246: Performance/Teaching of Cardiovascular Fitness & Resistance Training HPER P258: Activities for People with Special Needs HPER P271: Lifetime Activities (Camp Brosius, Elkhart Lake, WI) HPER P403: Theory and Practice of Cardiovascular Exercise HPER P409: Basic Physiology of Exercise Laboratory HPER P443: Internship in Physical Education HPER R275: Dynamics of Leadership Development (Camp Brosius, Elkhart Lake, WI) PRESENTATIONS 2009 Swinford, R. Line Dancing 101. Presentation, Indiana

Association for Health, Physical Education, Recreation and Dance Regional Workshops, Marion, IN & West Lafayette, IN

2010 Haggard, L., & Swinford, R. Hip-Hop & Country Too! Presentation, American Alliance for Health, Physical Education, Recreation and Dance National Convention, Indianapolis, IN

2010 Haggard, L., & Swinford, R. Midwest District AAHPERD Dance Gala. Choreographer and Performer, American Alliance for Health, Physical Education, Recreation and Dance National Convention, Indianapolis, IN

2010 Haggard, L., & Swinford, R. Country Beats Meet City Streets. Presentation PE4Life Resource Conference, Kansas City, MO

2010 Swinford, R., Arthur N., Lazaro, J., Ferrell, A., Gerena-Perez, B., & Anderson, M. STEPS To Creativity. Presentation, Indiana Association for Health, Physical Education, Recreation and Dance State Conference, Indianapolis, IN

2010 Sanders, G., Swinford, R., McCullough, T., & Walsh, K. Dance Council Mixers. Presentation, Indiana Association for Health, Physical Education, Recreation and Dance State Conference, Indianapolis, IN

2011 Keith, N., Culp, B., & Swinford, R. Campus and Community Physical Activity Partnerships to Promote Health. Presentation, Coalition of Urban and Metropolitan Universities National Conference, Indianapolis, IN

2011 Swinford, R. Country & Hip Hop Part II. Presentation, American Alliance for Health, Physical Education, Recreation and Dance National Convention, San Diego, CA

2011 Swinford, R., Sanders, G., McCullough, T., Walsh, C., Kline, K., & Kerr, M. The Dance Council Presents Line Dances & Dance Mixers. Presentation, Indiana Association for Health, Physical Education, Recreation and Dance State Conference, Indianapolis, IN

2011 Kline, K., Swinford, R., & Kerr, M. Fitness Line Dancing. Presentation, Indiana Association for Health, Physical Education, Recreation and Dance State Conference, Indianapolis, IN

2011 Swinford, R., Kline, K., Plopper, A., Kerr, M., & Gutierrez, A. Adapted Dance: Creative Movement for All! Presentation, Indiana Association for Health, Physical Education, Recreation and Dance State Conference, Indianapolis, IN

2012 Swinford, R., & Gutierrez, A. Experiences of individuals with Down syndrome who participate in dance, Poster Presentation, American Alliance for Health, Physical Education, Recreation, and Dance National Convention, Boston, MA

2012 Swinford, R., Kline, K. Adapted Dance Class. 4-P Support Group National Conference, Indianapolis, IN

GRANTS 2009 Co-PI, RISE to the IUPUI Challenge Curriculum

Development Grant Redesigned a departmental internship course to include a service learning component: INShape IUPUI

2012 Co-PI, Indiana Association for Health, Physical Education, Recreation and Dance Advocacy Grant Title: Everyone Exercising Everywhere: Home exercise videos targeted towards individuals with cognitive disabilities.

PUBLICATIONS

1. Stevens, R., & Bahamonde, R. (2006) Comparison of two methods of manual digitization on accuracy and time of completion. Proceedings of the XXIV International Symposium on Biomechanics in Sports, pp 680-684: Salzburg, Austria. July 14-18.

2. Meneghini, R., Smits, S, Swinford, R., Bahamonde RE (2008). A randomized, prospective study of three minimally-invasive surgical approaches in total hip arthroplasty: comprehensive gait analysis. Journal of Arthroplasty, 23(6): 68-73.

3. Swinford, R., Warden, S. 2010 Factors affecting short-term precision of musculoskeletal measures using peripheral quantitative computed tomography (pQCT). Osteoporosis International 21: 1863-1870.